BLOG.BLUERIBBONCAMPAIGNFORME.ORG

Please... sign petition to improve circumstances for patients in The Netherlands

andreyam@gmail.com (BlueRibbonsForME) — Fri, 04 Dec 2009 19:12:00 GMT

Dear friends, fellow patients and advocates,

We need your help.

I don't know exactly how to explain how far Europe is still behind. Not only is current research not sufficiently exposed in the media, even many patients still do not know there even MIGHT be a biomedical cause for their illness. They do not know there have been many research projects already.

Entire countries have been indoctrinated into the psychological beliefs and it will take quite an effort to change this around. But it WILL pay off, by increasing awareness around the world more funds will become available for biomedical research. (your motivation to sign...)

We hope and pray that research trials will be accessible in all countries soon, we hope for another press release by WPI or an international Health Organization and for advocacy to further unite.

In the mean while we are doing what we can to gather news, translate information and write to our press and governments. With a few people we have composed a petition to help improve the situation for patients in The Netherlands. (Diagnose Support is not bound to one country but we can only setup a petition in the country we reside).

Please follow Marly, Carlos and Mike as our international signers and put in the effort to sign our petition too. Instructions in English to guide you through the Dutch text (and the TWO steps in the proces) and a google-translation can be found at our website.

Email me if you can't make it work. Feel free to forward this message in your network.

Thank you for your time,
Carla, Diagnose Support

Petition: http://www.petities.nl/petitie/erkenning_van_en_biomedisch_onderzoek_naar_neuroimmuun_ziekten/

Translation: http://diagnosesupport.com/main/content/blogcategory/118/162/

Instructions: http://diagnosesupport.com/main/content/view/200/162/

Support Biomedical Research for ME/CFS by using the iGive.com toolbar everyday

andreyam@gmail.com (BlueRibbonsForME) — Wed, 18 Nov 2009 08:52:00 GMT

First of all, I would like to say thank you to everyone who made thispossible. We are now 4208 people strong and growing everyday.

Asmany of you know, the Whittemore Peterson Institute in Reno, Nevadapublished a paper linking a retrovirus called XMRV to ME/CFS. The BlueRibbon Campaign for ME/CFS would like to play its part in supportingthe WPI in making further findings that will help patients and familiessuffering with this debilitating disease.

You can do this by downloading a toolbar and searching the internet everyday.
At.02 cents a search, 5 times a day, 4208 of us can donate 153,592 dollars within the next 365 days.

From our computers we can help change the world.

To join us:

1. Click http://isearch.igive.com/index.cfm? b=15271
2. Download the toolbar
3. Register
4. I chose to donate anonymously
5. Choose the Whittemore Peterson Institute as your cause
6.Search everyday as you normally would, and shop at stores such as Ebayand Amazon, and your searches and purchases will add up to donations to the WPI. With the holidays coming up this will be your chance to do something for an underfunded cause at the same time as your bring joy to a family or friend.

Thank you so much for your support. If you have not joined our cause page as of yet, you can at Blue Ribbon Campaign for ME/CFS.

We also hope you will join us on our Fan Page.

Andrea Martell
Founder and patient with ME/CFS
BlueRibbonCampaignForME.org

WPI announces XMRV test kits through vipdx labs

andreyam@gmail.com (BlueRibbonsForME) — Thu, 05 Nov 2009 09:02:00 GMT

Press Release from WPI

Viral Immune Pathology Diagnostics Introduces New Test for XMRV Patients and Clinicians
-Net proceeds from test dedicated to further WPI research

RENO, Nev. – The Whittemore Peterson Institute (WPI) has recently published a research study
revealing the prevalence of XMRV in patients with Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome, ME/CFS or what has most recently been called, X associated neuro-immune disease,
(XAND). In response to an overwhelming request for a diagnostic test for XMRV, WPI has temporarily
agreed to allow Viral Immune Pathology Diagnostics (VIP Dx) to begin offering the identical tests that
have been extensively validated using the same technology developed by Drs. Lombardi and Mikovits
and their colleagues as reported in Science.

VIP Dx is a small state certified laboratory in Reno, Nevada that was formed in response to the
September 11, 2001 crisis which resulted in the cessation of blood sample shipments between the United
States and Europe. Faced with the loss of important lab tests impacting patients with neuro-immune
diseases, the Whittemore family made the decision to support the lab in Reno.
“Our family made it possible for the lab to not only continue delivering diagnostic tests to doctors, but
also help the WPI bring cutting edge biomarkers of disease to this field of medicine, such as the tests for
XMRV,” said Annette Whittemore, Founder and President of WPI. “Tests conducted for XMRV, and
other tests that support the diagnostic process in this field, will support the continuation of vital work at
WPI through our donation of all of our net proceeds.”

XMRV test acceptance commenced at VIP Dx this month. For more information about the XMRV test kit, visit www.vipdx.com.
Whittemore Peterson Institute

The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and
effective treatments to patients with illnesses caused by acquired dysregulation of the immune system
and the nervous system, often resulting in lifelong disease and disability. The WPI is the first institute in
the world dedicated to neuro-immune diseases, integrating patient treatment, basic and clinical
research and medical education.

Advocacy at its "finest"? - By Karen M Campbell

andreyam@gmail.com (BlueRibbonsForME) — Sat, 11 Jul 2009 09:10:00 GMT

Another advocate and I spent the better part of two hours today arguing
amongst ourselves whether CFS=ME.

I wrote:
> If you don't like the name CFS, feel free to bang your head against the
> wall demanding that CDC change it. I made my decision long ago that it
> was
> more important to find a cure than to argue semantics.

To which the response was:
> ur driving me crazy, the lack of logic is driving me carzy! I'm blocking
> your email for my sanity

How much more good could have been done for the cause if that two hours
each had been devoted to writing letters to the editor, letters to Congress
begging for research funding, letters to the new head of CDC asking for
legitimacy? Instead, it was wasted arguing semantics which doesn't change a
thing for the patients who are suffering from it.

And this is why CFS advocacy is in trouble, because there are too many
activists hung up on semantics -- is it CFS, is it ME, is it ME-itis, is it
ME-opathy? -- rather than getting down to the nitty-gritty that whatever the
hell you want to call it, it's a problem. It's a big problem. It's a $26B
problem in the US alone.

Let's work on solving the problem, and not on endlessly arguing about a
name that we, as patients, do not have the power to change. (Lord knows,
enough attempts have been made since 1988 to change it, or even to adapt it
from CFS to CFIDS, without success.)

A wise person once said to me "if you're not part of the solution, you're
part of the problem". Fighting amongst ourselves because some people
prefer the technically/historically correct name ME, and others are willing to
use the CDC-mandated term CFS, is part of the problem.

Let's keep our eyes on the goal here: to find a cure. If that means we
swallow our pride and call it CFS because that's the currently-accepted
terminology, so be it.

CFS is not accurate. It's disparaging. It's a misnomer. But, at the
moment, in the US, it's the name we're stuck with. You can waste your time
arguing with me about my choice to use a term people recognize versus a term
that CDC doesn't even acknowledge exists, or you can educate other people,
you can plan a fundraiser, you can do many other far more productive things
than calling another activist an idiot because she doesn't care what they
call it, as long as they cure it.

Personally, I'll worry about the name once we have a solution to the root
of the problem, getting a million patients healthy and back to work. Isn't
that a bigger problem than what to call it?

Karen M. Campbell
Sacramento, Calif.
Founder, www.CFSFacts.org -- dispelling the myths and providing the facts

When other sufferers don't understand- By Cara Macwilliam

andreyam@gmail.com (BlueRibbonsForME) — Mon, 06 Jul 2009 22:51:00 GMT

Ok so feeling quite pissy this morning, been on Twitter and read another of those “I kicked CFS & I have the secret, listen to my conference call and I’ll tell you all. You can get rid of it too.” It’s bad enough "well" people not understanding and belittling what you’re going though but for fellow sufferers to do it is just shameful. Fair enough say these are things that have helped me, may help you as they are non invasive, I don’t promise you a cure, I don’t promise miracles but it could be worth a try. That’s honest, that’s not psychologically hurtful. It’s like those NLP programs that claim to do the same thing, if you don’t get well it’s your own fault. I mean what is that all about? Would you say that to an MS / Lupus sufferer? No, people just allow themselves to spout this crap and their arrogance and ignorance is astounding. They also claim to be all knowledgeable on the subject. If they were, they’d know that CFS is different from person to person. I have yet to meet anyone with a similar experience to mine. I wish I could, it would help so much.

Some people go into remission some people don’t. Obviously if you are not listening to your body, you’re over doing things when you shouldn’t be, you’re eating crap everyday, you’re negative then of course you’re not doing yourself any favours. Well I don’t do those things, I take really good care, I listen to my body and it’s been three & half years now and to no avail, no periods of remission or partial remission. I know that I am doing everything I can to take control but you know what no surprises, it’s not getting any better. I’m not getting worse and that’s what I have to hold on to, I’ve not entered the 25% of severe sufferers and hope I never will. I know why I’m not getting any better and it’s not because of something I am or am not doing. It’s because I have a disease that is not understood and therefore not being controlled, it has free reign of my body and does what it wants at its will. If you’ve gone into remission then I am really and truly happy for you, you should count yourself as lucky not some Guru. You should also recognise that there are many kinds of this illness so your type may not be like my type and once the truth is out we will know what each person is fighting and what we need to do for each one. I suspect that they will find that there are types that are progressive and kill, we sadly see evidence of that far too often, and there are types that are very mild and cause few problems at all. So please do not put us all in the same pot, you’re preaching to the converted but not all of us can be saved until the illness is fully understood. We have accepted that, isn’t it time you did too?

Source: http://www.new.facebook.com/home.php?ref=logo#/note.php?note_id=112773848056&ref=mf

Five Things You Should Never Say to Someone with Chronic Fatigue Syndrome

andreyam@gmail.com (BlueRibbonsForME) — Fri, 03 Jul 2009 04:55:00 GMT

It is extremely difficult to suffer from an illness like chronic fatigue syndrome (CFS) both physically and emotionally. While awareness has improved dramatically over the past 20 years, there are still many doctors and society in general who do not believe this debilitating illness is real. If you have been fortunate enough to have a doctor, family and friends who believe you are truly ill, there are still many stereotypes and misconceptions surrounding CFS.

Chronic fatigue syndrome is a complicated illness that affects the brain and multiple areas of the body. Some of the major symptoms include extreme exhaustion, debilitating fatigue, post exertional malaise, pain, sleep disorders, short-term memory problems, confusion, cognitive dysfunction, sore throat, hormonal deficiencies, headaches, irritable bowel syndrome, tender lymph nodes and multiple chemical sensitivities to name a few.

CFS can be a difficult illness to diagnose because the severity of symptoms fluctuates among each patient. The only way to diagnose CFS is through eliminating all other possible illnesses and by following the CDC diagnostic criteria for CFS.

I have lived the past 20 years trying to learn how to cope with chronic fatigue syndrome and the numerous symptoms that affect every aspect of my life daily. Trying to cope with the misconceptions, rude remarks and insensitive comments is almost as bad as dealing with the physical whirlwind of CFS. As a patient myself, I know that what I would like more than anything, besides a cure, is to be understood. Hopefully my list of what not to say to someone with CFS will help educate society and gain compassion for all of us suffering from this chronic disorder.

1. “I’m tired all of the time too.”

CFS is much more than tired. The exhaustion is so severe that just taking a bath or getting dressed can take every drop of energy a patient has. A simple, routine task that most people do without even thinking about can put a CFS patient in bed for days and sometimes even weeks.

2. “At least you don’t have cancer.”

Did you know that CFS patients suffer as much as AIDS patients, cancer patients and those suffering from end-stage renal failure? Telling a CFS patient they could be worse off is like telling them they aren’t seriously suffering.

3. “You don’t look sick.”

When I hear someone saying this I always wonder what “sick” is supposed to look like. There are many illnesses out there where the patients are severely ill yet you would never know it to look at them. When someone is severely ill and is told they don’t look sick, the comment is received as though their illness isn’t real.

4. “If you just had a positive attitude and would tell yourself you are healthy you could get well.”

I do believe that a positive attitude is necessary in life, especially when you are suffering from a chronic illness, but it will not cure someone. The theory of acting healthy to be healthy can be extremely detrimental to a CFS patient. We can’t pretend and carry on like a normal healthy person because our bodies are not physically capable of doing this for any length of time.

5. “Someone as young as you can’t be this sick all of the time.”

CFS does not age discriminate. It can affect anyone at any age of their lives from childhood to senior citizen. There are many of us CFS patients who became ill very young and have missed out on way too much of life because we are so sick. You don’t have to be old to be disabled.

CFS affects millions of people worldwide. It’s time for a cure, understanding, and compassion.

Source: http://healthfitnesshowto.com/five-things-you-should-never-say-to-someone-with-chronic-fatigue-syndrome/

Blue Ribbon Campaign for ME/CFS voted 10 out of 10 on Top 10 Causes

andreyam@gmail.com (BlueRibbonsForME) — Wed, 01 Jul 2009 23:39:00 GMT

Top 10 Causes had 2299 people on twitter vote for their favorite cause on Twitter. There were 53 amazing causes/charities recommended. Voting occured for a 3 week period from June 15 - June 30, 2009.

Thank you to everyone who participated in the voting for BlueRibbonCampaingforME.org as a Top 10 Cause.

According to the Top 10 Causes website:

"@Top10Causes will now work hard to promote, raise awareness and support the new Top 10 Causes on Twitter via Twitter, Facebook, Blog, and this website.

Our mission is, and always will be, to bring awareness to amazing causes/charities on Twitter. If one person finds the help they need, when they need it, through our awareness campaigns, we have succeeded."

1. Alex's Lemonade http://www.alexslemonade.org/

Alex's Lemonade Stand Foundation evolved from a young cancer patient's front yard lemonade stand to a nationwide fundraising movement to find a cure for childhood cancer. Since Alexandra "Alex" Scott (1996-2004) set up her front-yard stand at the age of four, more than $25 million has been raised towards fulfilling her dream of finding a cure for all children with cancer.

2. Hydrocephalus Association

http://www.hydroassoc.org/

Our mission is to provide support, education, and advocacy to people whose lives have been touched by hydrocephalus and to the professionals who help them.

3. Abundant Water http://abundantwater.org/

Abundant Water is a charitable group working to bring clean drinking water to those who need it in developing nations. We give 100% of the money raised to direct project costs, funding sustainable clean water solutions in areas of greatest need.

4. Amazon Cares http://www.amazoncares.org/

Since being founded in 2004, our scope has expanded to address important topics. These include animal welfare, but also, human health, domestic violence prevention, humane education, conservation, environmental issues and assisted animal therapy.

5. Smile Train http://www.smiletrain.org/

Smile Train is the world's largest and most effective cleft charity - we help more children than all similar charities combined. The cleft surgery your donation provides is a true, modern-day medical miracle: it costs as little as $250 to give a desperate child not just a new smile, but a new life.

6. War Child Holland http://www.warchildholland.org/

War Child's goal is to empower children and young people in war-affected areas through community-based programs, which strengthen their psychological and social development and well-being

7. Caring Bridge http://www.caringbridge.org/

CaringBridge® is a 501(c)(3) nonprofit web service that connects family and friends during a critical illness, treatment or recovery. A CaringBridge website is personal, private and available 24/7. It helps ease the burden of keeping family and friends informed. Patients and caregivers draw strength from loved ones' messages of support.

8. Spirit Jump http://spiritjump.blogspot.com/

Spirit Jumps goal is to provide hope and comfort to the many men, women and children battling cancer one gift at a time. To let each and every cancer fighter know that they are not alone in their battle and that there are many of us who are rooting them on. When someone is looking for a reason to keep fighting we hope a little package of love arrives to give them the extra strength they need to get through the day.

9. Jessica's Trust http://www.jessicastrust.org.uk/

Our primary aim is to raise awareness of childbed fever: we would like every parent and every midwife and doctor to know that childbed fever (also called puerperal fever or puerperal sepsis) is still a very real threat to a mother's life.

In the same way that every parent knows the danger of Meningitis, we believe that parents should be told about sepsis and childbed fever in ante natal classes and at the point of post natal discharge.

10. Blueribbons4me http://www.blueribboncampaignforme.org/

The Blue Ribbon Campaign was started in April 2009 by an M.E./CFS patient in Canada. The purpose of the campaign is to raise awareness of a devastating disease known as Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).

Our mission is :

* to centralize and promote the message that ME/CFS is a serious physiological disease
* to raise funds for awareness and exclusively biomedical research, including the development of a tissue bank.
* to end stigmatization of persons with ME/CFS
* to promote and facilitate proper biomedical research, diagnosis and treatment
* to advocate for patients for governmental recognition in terms of financial support, medication (e.g. Ampligen) and treatment coverage; to offer support and resources to ME/CFS patients and their families.
* to act as an umbrella organization to support other ME/CFS organizations around the world.

One Spoon Campaign in the UK: Complete the APPG questionnaire

andreyam@gmail.com (BlueRibbonsForME) — Sun, 28 Jun 2009 10:37:00 GMT

Message from MeFreeforAll.org

May I urge as many M.E. patients in the UK, as can manage, to complete the
APPG (All Party Parliamentary Group) questionnaire about NHS services even
if you think it is as flawed as I do, if you do not have services in your
area, if you have not been offered them, or not had them at all.

Attempting a to complete it may illustrate some of the problems with it. You
also have an opportunity to make your own comments at Q.19 and, of course,
you could write to MP Des Turner as well if you choose.

[People in other countries may be interested in following this because,
although this is specifically about a service in the UK, the main
treatments, Cognitive Behaviour Therapy (CBT) and Graded Exercise treatment
(GET), are suggested universally]

You can get the survey to fill in online or to download and send in the post
Click here:
http://www.appgme.org.uk

MP, Dr Des Turner's e-mail address is

turnerd@parliament.uk
that is turnerd at parliament dot uk

One Spoon Campaign: ACT NOW ON CDC RESEARCH PLAN

andreyam@gmail.com (BlueRibbonsForME) — Sat, 27 Jun 2009 18:13:00 GMT

ACT NOW ON CDC RESEARCH PLAN
============================
Tell planners that the status quo isn't good enough

Take Action! Visit this page:
http://capwiz.com/cfids/utr/1/LJHBKTPTTF/AOCGKTPTWY/3560606751]

For nearly two years, the CFIDS Association of America has been
working to effect a more robust research effort at CDC. In spite of
these diligent ongoing efforts, the past two years of dialogue and
public testimony has produced a 5-year draft plan from CDC that is
substantially the same as what CDC has been reporting since 2006.
Status quo. Groundhog day. Déjà vu. All over again.

In response to CDC's request for input on its draft plan (posted at
http://capwiz.com/cfids/utr/1/LJHBKTPTTF/JHVKKTPTWZ/3560606751), the
CFIDS Association has prepared a detailed
response, making both criticisms and recommendations for how one-half
of the nation's investment in CFS research will be spent through 2013.
Our letter is posted at
http://capwiz.com/cfids/utr/1/LJHBKTPTTF/AVKDKTPTXA/3560606751 for your
review. We have used many of CDC's public
reports to document the lack of progress and failure of the program's
leadership to meaningfully advance practice and prevention to improve
patients' lives.

To shift the dialogue and demonstrate a more united front of the
research, clinical and patient support communities against the status
quo, we invite you to "endorse" our letter by sending your
own message of support to CDC at CFSResearchPlan@cdc.gov or by
responding to this Action Alert!

The deadline for comments is Tuesday, June 30. CDC has committed to
keep its e-mail address functioning after this date, so even if you
can't act before June 30, please do so as soon as possible. Share this
message with friends and family and ask them to do the same.

$20 million spent over the next five years is hardly sufficient to
address the public health challenges that CFS presents, but it's too
much money to waste on a weak, ineffective CDC research plan.

K. Kimberly McCleary
President & CEO
The CFIDS Association of America

Petition for biomedical research for ME/CFS- Norway

andreyam@gmail.com (BlueRibbonsForME) — Mon, 22 Jun 2009 00:18:00 GMT

|More

A petition has been undertaken online Norway for biomedical research into ME/CFS http://www.opprop.no/opprop.php?id=meopprop&page=1 This is an initiative made by members of the Norwegian online ME-forum http://meforum.diskusjonsforum.no/

What follows is the English translation of the petition by Cathrine Eide Valsø

ME/CFS – The right treatment for the right patient

To: The Ministry of Health and Care Services in Norway

The parliamentary committee of health- and social service and the Network of Competence for ME

Myalgic Encephalomyelithis (ME) has been acknowledged by the World Health Organization (WHO) since 1969 as a nevrological disorder with the code G 93.3. It is estimated that between ten and fifteen thousand (10-15000) Norwegians are suffering from this serious, chronic disease. At world level it might be as many as 28 million patients, and outbreaks of the disease occurs both in epidemic and sporadic form. Health care systems all over the world has for many years denied ME by treating it as a non-existing illness. Because the underlying cause of the disease still is unknown and the symptoms complex, ME is by some in the medical community still regarded as a psychiatric or psychosomatic disease.

From 1956 the illness had the name ME and was treated on basis of the biomedical aspects of the disease, but after an epidemic outbreak in USA mid 1980s, a group of physicians without enough knowledge of the disease gave the illness a new and very trivializing name – Chronic Fatigue Syndrome (CFS). This trivializing name was in the beginning of the 90s used by a group in England, led by the psychiatrist Michal Sharpe, to re-describe the criteria of the illness in a way that also included all types of patients with fatigue lasting more than 6 months, including patients with psychological illness.

The unknown cause of ME and the inclusion of various groups of patients to what now is called ME/CFS is an intolerable situation both for the patients and society in general. A uniform treatment of a heterogeneous group of patient can only lead to very varying results and will in many cases result in mistreatment and making the illness worse for the patients. This situation also hinders focusing on what ME-patients needs most of all: Precise diagnostics and hope of a future biomedical treatment. Lacking an offer of treatment from the health system, many patients are desperately seeking various forms of self-financed, alternative treatment, most often based on recommendations and experiences from other patients.

The health care system in Norway can not stand by and watch this situation continue. Establishing the ME/CFS-center at the Ullevål University Hospital is a step in the right direction, but the fact that the Health Directorate now is thinking about launching new guidelines (NICE) will lead to a situation where many patients with other diagnoses and other needs of treatment will be diagnosed with ME, making the situation worse. If one is willing to improve the situation for these patients, one must look away from criteria that includes heterogeneous groups of patients and not regards enough the specific characteristics of ME. Further, the diagnostic approaches must be improved by using the methods and tools able to define and differentiate the illness of these patients in such a precise way as possible.

The public health system has for many years tried to explain and treat ME/CFS with a psychosomatic approach without success. Publicly funded biomedical research has been hindered based on this model of understanding, and the problem with ME/CFS has only grown. If there is a will to change this, the biomedical research that shows an organic cause of the illness must be taken seriously. The right research communities must be strengthened and criteria of inclusion instead of exclusion must be established for the illness(es). To achieve this, methods of laboratory research and technology must be improved, and also expanding the use of advanced scanning technology. Improved diagnostics will help all those who fall under the diagnosis ME/CFS today. We therefore ask the following:

1) Say NO to the establishment of the NICE guidelines in Norway and cognitive behavior therapy and graded excersise as the only recommended treatment. Organic disease demands biomedical treatment. New and more precise criteria and procedures for diagnosis must be developed based and the so called Canada-criteria, and sorting out the category of ME/CFS.

2) Setting aside sufficient funding for biomedical research for precise diagnostics and possible bio-markers for ME in cooperation with international research communities. History has shown that many diseases often gets the wrong label because there is no understanding of the cause, or that the causes are hard to find. There lies a great economical and societal value in establishing precise biomedical diagnostics for the diseas(es).

3) The patients who are most hardly struck by the illness must be offered in-patient care and competent care in all regions. This will give an incomparable experience in the health system for treatment of and care for the patients.

We hope that all political parties will follow The Norwegian Labour Party in specifying in their program research and medical treatment for ME-patients, so that Norway becomes a country that finally gives a adequate treatment to these patients. This will result in more patients being able to go back to work and higher quality of life for those afflicted by the disease. People with insight and vision is needed to move this cause forward.

Thank you for your attention. Know that your support means a lot!

Chronic Fatigue Syndrome Patients - Sick and Tired of It All--By Christina Gleason

andreyam@gmail.com (BlueRibbonsForME) — Sat, 20 Jun 2009 11:21:00 GMT

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Chronic Fatigue Syndrome (CFS) is an immune dysfunction disease that is currently treated like the red-headed stepchild of the medical community. Despite the fact that CFS has been recognized by the CDC, many doctors still believe it isn’t a real illness, but others who do recognize it as a valid concern ignore it because there still isn’t a simple diagnostic test to identify it. Since there is no cure for CFS, medical professionals are hesitant to label a patient without being able to fix them.

Patients who have CFS are sick and tired of being shoved aside by the medical community. They are literally sick and tired as well. Take a look at the primary symptoms of Chronic Fatigue Syndrome, four of which must be present for six months or more for a diagnosis:

Unrefreshing sleep
Post-exertional malaise
Poor memory and/or concentration
Joint pain without swelling or redness
Unexplained muscle aches or pain
Headaches of a new type, pattern, or strength
Lymph node tenderness in the neck or under the arm
Sore throat

To Read more of this article click here.

Reprinted with permission from the author.

The Power of the Spoon-To give and to take away

andreyam@gmail.com (BlueRibbonsForME) — Fri, 19 Jun 2009 21:54:00 GMT

As everyone living with chronic illness knows, each spoon we have has to be given away with care and thought. Each spoon we give away could be one that could be used to:

Do something nice for ourselves
Do something for our hygiene like shower or brush our teeth
Cook ourselves a meal
Spend time with family

One spoon can mean the difference between a good day and a bad day, because sometimes there are no spoons.

Because each spoon we give away is one we will not get back. Each day is a struggle to choose what we give away our spoons to.

In the month of April, I chose to give my spoons to this cause. The Blue Ribbon Campaign for ME/CFS cause. I did not choose the Blue Ribbon. I did not choose May 12th as Awareness day. My mission was to do my part in making May 2009 the biggest Blue Ribbon Campaign for ME/CFS ever. I hoped that from that campaign leaders would emerge to help make my vision a reality, and trust me, I need help because my vision reaches far beyond my own life and is very detailed. Each leader that emerged was strong, helpful, and hard working.

Since May of 2009, we worked together on the campaign. Each day, I gave my spoons to them for endless email and discussion.. An informal board was elected, so that plans to incorporate could go forward. This has meant flurries of emails in my inbox everyday, and endless "chats" on every detail.

This is what it takes to build an org from the ground up. I have a strong voice in print,and a weak one in speaking as you know if you've seen our Voices 4 a Cure Video Most of my spoons have been given to this email or that chat, and I feel the focus of my personal mission has been lost because I was not giving my spoons to the cause, I was giving them to emails and chats.

So, for my health and for my vision of the future, I decided I could not keep giving away my spoons day after day in the same way that was causing me pain and hindering me from doing the work I wish to accomplish. This is not an insult to the hardworking ladies of the former informal board, instead a recognition of my own limitations.

The message does matter most to me and I want to play my part in making that message go viral through campaign ideas I have, publications, and writing, as I am today. However, I could not do that while my strength and energy were being given away in another form. So like all of us living with chronic illness, I had to make a choice.

This is the first day since May 15th, that my inbox has not been flooded, and I have not had to use my spoons for writing, discussing, and arguing my vision and because of this, I have a spoon to write this message to you instead.

The only terms I've used publicly to refer to my reasons for leaving the informal board are "personality conflict" and "irreconcilible differences". I do not feel that the public needs to know more than this. If donors are happy as to where their money is, I am okay with it, but I felt it my duty and responsibility to speak out on behalf of money raised in my account name for the BRC, and in some cases with my picture beside it. My only concern has been for the donors.

We are all fighting for the same cause. I just cannot fight, cannot give my spoons to constant conflict with people.

I choose to give my spoons to this cause. I do not choose to give my spoons to conflict.

As I said before, this highlights the strength of the spoon. With one spoon, you can do so much for this cause, and by cause, I mean the overall mission: to have ME/CFS to be known and treated seriously by the world. Who gets that done does not matter. It is the message that matters.

The message matters more than one person, one group, or one organization. The message is what it is going to bring us out of darkness.

I am doing what is best for me, so that my spoons are used for this cause.

The Blue Ribbon Campaign for ME/CFS will support any org, any individual, any research that gets the job done!!! My personal decision does not change that. I ultimately want to make sure my own spoons are going to this cause, and this is the only way I know to make that happen.

The former informal board asked that all their work. names, and new organization be removed from this website. I have complied with their instructions. As of this writing, they have not complied to any of my requests to act in kind by removing my name and mentions for the BRC from their websites.

I repeat that I am not doing this out of ill will towards the former informal board, I am doing this for my own health. I am happy that the aforementioned ladies have spoons to give to continual discussions, but I do not. I continue to wish them well, as our cause, and our missions are the same.

I will be re-updating the website as my spoons permit, as well as starting the campaigns I planned to, but have not had time to do until now.

I have as of this writing begun the 1 spoon campaign. You will be hearing this more and more. I am asking all people with ME/CFS to use one spoon a day, if they can spare it, to send a message across the world that this disease matters, that this disease requires the same recognition, research funding and treatment as Cancer, Heart Disease and HIV/AIDS.

I will be updating this post, and blog about how you can use one spoon a day to raise your voice online for ME/CFS and help take us out of darkness.

What you can do with one spoon:

Send a Blue Ribbon For #ME/CFS on Facebook http://ow.ly/eJve
Join our Cause on Facebook http://ow.ly/cXV5 and invite 100 friends. #brc4ME
Copy and Past Tweets 4 BRC http://ow.ly/fcKW

Sincerely,

Andrea Martell
Founder BlueRibbonCampaignForME.org

CFS Patient Groups Cowed By The CDC? ---Written By John Anderson

andreyam@gmail.com (BlueRibbonsForME) — Fri, 12 Jun 2009 11:36:00 GMT

Permission to repost

The only sane and rational response to the evident failure of the DHHS, CDC and NIH to respond with any sense of urgency to the public health threat of the epidemic disease MyalgicEncephalomyelitis over the
last 25 years can be found by reading Hillary Johnson’s powerful and forthright
speech titled “The Why” which was presented at the Invest in M.E. London
Conference on May 28th 2009. That is how you address the systemic failure
to address a disease that has destroyed the lives of millions around the globe
– speaking up truthfully and fearlessly about the undeniable facts. I applaud
Hillary for telling it like it is!

I ask all “CFS” patient organizations to read this speech again and explain why they have not addressed the incriminating facts in their meek testimonies to the CFSAC. Why are they not exposing the elaborate web of deceit that ignored the evidence for this epidemic disease, replaced it with a phantom creation called CFS, branded it as an unexplained illness,
restricted research to the genetics of stress, and cast patients as defective,
inferior human beings? A modern day eugenics program has been revealed in the words of Reeves himself, and you have little to say that would radically alter
this inhumane and unforgivable state of affairs?

I read your testimonies and see nothing but suggestions for tweaking this indefensible program. Remove Reeves - but the CDC will find a similar replacement; make available the CDC’s research data since1984 - on its phantom creation CFS; request that it abandon its Empirical CFS Definition - ignoring the preceding false definitions; collaborate with other researchers and organizations - under the CDC’s self-proclaimed supremacy; partner with the IACFS/ME - whose conferences still unashamedly promote psychosocial research, or the CAA - who benefited financially in the branding of CFS; all calling for more of the same research to nowhere.

Hillary asks if we are more comfortable being labelled as mental patients, and from the evidence of these testimonies it
appears that our so-called charities would rather let the false “CFS” construct
become more entrenched while millions of dollars are wasted on damaging
psychosomatic theories and not on urgently needed biomedical research. Not one patient group is standing up for the scientific facts that have overwhelmingly demonstrated that M.E. is an infectious and inflammatory disease of the central
nervous system, that this was the disease the CDC redefined as “CFS”, that the disease is being transmitted through us and the blood banks without warning to the general public, and M.E. patients are dying because of institutionalized medical ignorance and neglect.

Not one group is demanding a Congressional Inquiry into the institutionalized denial of Myalgic Encephalomyelitis, demanding that
the DHHS, CDC and NIH recognise the infectious disease M.E., and for the
creation of a definition that addresses the neurological, immune, autonomic,
cardiac and mitochondrial dysfunction together with the known biomarkers of the disease, or that the CDC renounce its CFS program and alert the public to this
pandemic, or pushing for politicians and human rights groups to urgently
address this evident public health crisis. Not one group will acknowledge that
M.E. is the crisis! What is the gain to these groups by cowing to the CDC’s
“CFS” and not standing up for M.E.?

These groups do not protest against the request forwarded to newly appointed CDC director, Dr. Thomas Friedan, that “CFS activities” be moved from the National Center for Zoonotic, Vector-Borne, and Enteric Diseases at the Chronic Viral Diseases Branch - to the National Center for Chronic Disease Prevention and Promotion, a serious downgrade of priority. Not one group is demanding that the NIH place M.E. at the National Institute for Neurological Disorders and Stroke with a formidable budget - they do not question the CDC’s “CFS” being housed at the Office of Research into Women’s Health, knowing that no neurologist or other specialist will ever hear of the infectious disease Myalgic Encephalomyelitis. Whose side are these groups on?

Sadly, if all these groups and individuals are content to quietly ask the CDC to tweak its “CFS” program then another
generation will have to fight this battle all over again and those of us beaten
by this terrible disease will struggle to live out our final days of living
hell in misery.

Heroically, the renowned author of 'Osler’s Web' has spoken publicly and fearlessly about what we now know were outbreaks of Myalgic Encephalomyelitis and not some “new illness” that the CDC allegedl “discovered”.

Why can’t all patient groups call for truth and justice for M.E. sufferers with the same fearless voices?

Will anyone hear Hillary’s brave and timely callor us to be more “radioactive”, before it really is too late?

John Anderson

As a Note from Andrea Martell from BlueRibbonCampaignForME.org . We are heeding the call and when enough voices have joined ours, we will not be denied.

Keys to Abusive Behavior in Treatment of ME/CFS patients- By Mary M. Schweitzer

andreyam@gmail.com (BlueRibbonsForME) — Wed, 10 Jun 2009 06:58:00 GMT

Reprinted with permission from Mary M. Schweitzer

From Slightly Alive, unpublished book manuscript, Mary M. Schweitzer, Ph.D., ©2009

As I read back through the psychiatric studies used to back the therapies of CBT and GET, and also as I began to read the mammoth and brilliant piece of work just released by Malcolm Hooper:

The Mental Health Movement: Persecution of Patients?

I found myself thinking about the steps that an abusive spouse or parent takes to perpetrate the crime. People often ask victims of abuse, "Why didn't you report this the first time it happened?" The victim generally has no good
answer, because he or she has been the unwitting subject of a psychological campaign by the abuser to prevent any disclosure of what is going on. Here are the main means by which abusers are able to continue their cruelty for years.

1. Isolate the victim
2. Tell the victim nobody will believe his/her story.
3. Threaten the victim with harm if he/she tries to tell the story anyway.

1. Isolate the Victim

This is accomplished by a diagosis that leaves the worst patients bereft of medical care and isolated at home. People in the "real world" do not see the worst cases. They do not see them when they come in to clinics - because they
don't come in to clinics. They do not see them at the grocery store or outside because by leaving them untreated, they have rendered the worst victims unable to participate in any way in the outside world. And by laughing at our disease,
they keep the walking wounded invisible too, because no one wants to confess to HAVING this disease. So the victim has been isolated. In the places where M.E. was a valid diagnosis, the abusive relatioship first required the premise that
M.E.=CFS (it does not), followed by the premise that CFS = "maladaptive coping mechanisms to illness" or "inappropriate desire to play the sick role."

2. Tell the victim that nobody will believe his/her story

Now, this has a twist. The recommendations of the Wessely-White-Sharpe-Chalder-Deary school of professional abuse don't have to tell the victim he/she won't be believed - we already know that. The twist in this case is in the information they are giving health care providers. They say NOT TO BELIEVE WHAT WE TELL THEM. The concept of "false illness beliefs" is heavily emphasized in all of the literature, including the CFS website of King's College London. They recommend that the medical profesional offer sympathy and PRETEND to believe what the patient is saying, but they warn not to get drawn in. Doctors who DO believe what the patient is saying are themselves isolated by
being charged with supporting abnormal "illness behaviors."

The CDC's version of this was to say - There were no cluster outbreaks. There were just outbreaks of diagnosis. Patients would go from doctor to doctor, seeking a diagnosis to confirm the patient's own beliefs about his/her
illness. it is, of course, an insult to the doctors who helped patients in the cluster outbreaks as well as an insult to patients - but the argument succeeded. Few people know about the cluster outbreaks of the 1980s, and nobody knows about those that have happened since. You will find evidence of this in Hillary Johnson's masterpiece, Osler's Web, and I was present to hear Dr. Reeves use this argument to explain away the "theory" of cluster outbreaks at the CFSAC.

3. Threaten the victim with harm if he/she tries to tell the story anyway.

This is the scariest one of the three - scary because we are not talking here about an individual, but about a society, about a government entity. About the very people who are supposed to help you (doctors). What is the threat? In the UK it's very clear: You will be sectioned. You will be sent to a psychiatric hospital. The threat can be the withdrawal of any medical care at all. That is, if you persist in peppering me with information about CFS, I will no longer be your
doctor - so where will you go when you need medical treatment for something else? I'll treat you - but don't bring up that silly disease fantasy.

Sophia Mirza needed care, but no doctor would agree to her simple request that she just see somebody without the threat of being sent into a psychiatric hospital. Sophia had been mistreated badly in a mental hospital and did not
want to go back. No doctor would promise not to send her back to the psychiatric hospital, so she saw no doctors. She had been threatened into isolation. It was abuse by the medical profession that killed her.

The threat is greater in both nations when applied to young people who become severely ill with M.E., because it is the young who are the most vulnerable. The threat is that they will be taken from their parents, because their parents
have gone to a lot of trouble to seek a diagnosis and find a way to make their child more comfortable - perhaps even find a cure.

This should be perceived as admirable behavior, but the diagnosis of "factitious illness" and "factitious illness by proxy" represent cruel violations of the normal doctor-patient relatioship. In the U.S., the threat of "coming out" - of trying to get treatment and accomodations for your child - is that your child will be sent off to the foster care system and never returned. The threat is to have happen to you what is happening to the Baldwin family in North Carlina, whose son Ryan was removed from his parents' home apparently because his parents were successful in finding a diagnosis that could help relieve some of his discomfort, successful in getting him a wheelchair to help him be more independent, and successful in being accepted for disability payments in his behalf with which to make his life more comfortable, and fund
his medical care.

In England, the threat is to be "sectioned" - to be sent to a mental hospital. And in both nations, this threat is very, very real. So this is the final threat:

If you come out about what you have, we will make your life miserable. We may even kill you.

So says the abuser.

So say the advocates of the British psychiatric school of "CFS treatment."

So say the marketing wizards behind cognitive behavior therapy and graded exercise therapy.

What does history tell us about abuse? The victim needs help from the rest of society.

Last week there were meetings in London and in Washington that - hopefully - can inform society about the institutionalized pattern of abuse which has been directed towards patients so unfortunate as to be diagnosed with "CFS".

God willing, things will change.

Mary Schweitzer

Experts Launch Think Tank for Mystery Disease - Press release from http://esme-eu.com/

andreyam@gmail.com (BlueRibbonsForME) — Wed, 10 Jun 2009 06:45:00 GMT

Press Release: Printed from http://esme-eu.com/ Important parts of the Press Release are in bold

Ten leading scientists in Europe have formed a Think Tank for ME and will hold their first meeting on the 13th of June. They want to initiate an effective research effort to find the secret behind the mystery disease that cripples an increasing number of lives.

Myalgic Encephalomyelitis,often referred to as Chronic Fatigue Syndrome (CFS), is a disease which affects at least one million individuals in the US, and an even greater number in Europe. Despite the large number of people affected, there isa lack of serious large-scale research initiatives focused on the disease. The number of patients is rapidly increasing but healthcare personnel lack knowledge about existing research and possible treatments.

Last year's winner of the Nobel Prize in Medicine, Professor Luc Montagnier of France, says, "Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes.” Montagnier, one of the discoverers of the HIV-virus, is a supporter of the Think Tank, but is unable to join the first meeting due to his demanding schedule.

Treatable Disease
Ten internationally recognized scientists, many of them prominent leaders in their respective fields of research, have decided to do something about it. They have come together in a Think Tank to promote cooperation among scientists from various disciplines and to stimulate intense focus on innovative and creative research. The first meeting is set in Stavanger, Norway on the 13th of June.

“There are more than 5000 research papers which show that ME has an organic basis with abnormalities in the immune, nervous and gastrointestinal systems and that it is influenced by genetic and environmental factors,” states Professor Kenny De Meirleir of Belgium. “Despite these findings, it has been close to impossible to initiate large-scale research to verify these facts and observations. We will never be able to treat ME properly if we do not initiate this type of research.”

Using new biotechnological techniques, much of the underlying pathophysiology of the disease has been unmasked. Several treatable clinical entities have been discovered, but this information does not reach healthcare personnel. The result is that patients remain undiagnosed and untreated for years with something that might be fully treatable. This is a huge drain on the economy, as the estimated socio-economic costs for Europe are estimated to be €20 billion annually.

Educate Professionals
An important part of the Think Tank’s mission is to spread knowledge about the disease. The incidence of ME and the impact on public health are actually higher than that of other better researched conditions like Multiple Sclerosis and HIV. Research shows that ME can be a very disabling chronic disorder which often diminishes patients’ quality of life to levels lower than that of cancer, MS, HIV and lupus.

Professor Ola Didrik Saugstad of Norway states, “There is a total lack of knowledge and understanding about this disease in the healthcare system. We wish to use our knowledge to educate and train doctors, therapists and other healthcare personnel so they can better understand how to manage an ME-patient.”

New in ME
The Think Tank meetings are the brainchild of a new organization, European Society for ME (ESME). This society will focus on organizing research and educating professionals in the field of ME.

“Until now ME organizations have been patient-based and only focused on the needs of the patients, so this is something completely new and unique. We are a group of professionals who want to stimulate new research in the field of ME and to help doctors and healthcare personnel to stay informed about the latest developments in diagnosing and treating ME-patients,” says ESME board member Mrs. Catherine Miller-Duhen.

Press Conference
The first Think Tank meeting will be held in Stavanger, Norway on the 13th of June. This will be immediately followed by a press conference where the specialists will be available for comments and interviews.

On Friday the 12th of June, a conference will be held to train healthcare personnel in the diagnosis and treatment of ME-patients.

Press conference: Saturday 13th of June, 4 pm, Press room, Clarion Hotel Stavanger, Stavanger, Norway.To register for the press conference and ensure receipt of a press packet, please send an email to Rebecca Hansen at: icerebel62@hotmail.com

Contact persons:

From ESME: Rebecca Hansen: +45-25713577, icerebel62@hotmail.com

Svein Harvang: +47-90180049;

Patient contacts: Anette Gilje: +47-95934023, anette.gilje@c2i.net

Mette Schoeyen: +47-47844671, metteschoyen@gmail.com

Coping Tips for ME/CFS cognitive difficulties

andreyam@gmail.com (BlueRibbonsForME) — Fri, 05 Jun 2009 20:01:00 GMT

Multi-tasking: A challenge for patients with CFS

Gudrun Lange, PhD
Pain and Fatigue Study Center, UMDNJ-New Jersey Medical School

As a researcher and a practicing clinical neuropsychologist my task is to assess cognitive function in CFS patients. Once the test measures given are scored and the results interpreted, I provide feedback about my findings. Very often the findings are consistent with decreased information processing speed and poor working memory while overall intellectual function is usually intact. These results are not uncommon in CFS and are supported by increasing research evidence (1,2). During feedback sessions, I aim to explain the deficits found, but are frequently asked the question: “How do these findings relate to what I am experiencing in my daily life and what, if anything, can I do about it?” I will use this brief essay to begin to address these questions.

To read the full article at the IACFSME.org website please Click HERE.

Project: Report from Dr Richard Sykes as provided to the ME Association

andreyam@gmail.com (BlueRibbonsForME) — Fri, 05 Jun 2009 09:40:00 GMT

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From Suzy Chapman suzy.chapman@virgin.net

Note: Action for M.E. were principal administrators for the CISSD Project.

The following are excerpts regarding ME/CFS and the CISSD project 's report from Dr. Richard Sykes. The full report can be found at
http://www.blueribboncampaignforme.org/CISSD_Project.html Comments from Andrea Martell of the Blue Ribbon Campaign for ME/CFS are in brackets and in bold. The unbolded exerpts are written by Dr. Sykes)

PART 2 THE CISSD PROJECT AND CFS

2.1 Background

There is a major problem for people with CFS that arises from the claim, made by many psychiatrists and others, that CFS should be regarded and classified as a Mental Disorder, specifically as a Somatoform Disorder. This claim has caused great offence and concern to patients and has often led to major difficulties in doctor-patient communication. Patients generally consider that their
illness is a physical disorder and that to regard it a mental disorder indicates medical misunderstanding and can lead to mistreatment.

(CFS is not classified as a Mental Disorder anywhere, and therefore each patient with a diagnosis of CFS should be treated according to how it is already classified, as a neurological disorder at G93.3 according to ICD 10)

As mentioned earlier, these disputes were the starting point for the CISSD project. They led to questions such as "Why should CFS be considered a Somatoform Disorder?", "What precisely are Somatoform disorders?" "How should they be described and defined?" Why should they be considered Mental Disorders?
Etc.

In trying to find answers to these questions, it became clear that there were many complex issues involved and that the answers were not simple.

2.2 Somatoform Disorders, the International Classifications and CFS

There are still problems associated with the classification of CFS. It is true that CFS is listed under "syndrome" in Volume III, the Index, of ICD-10 and placed in G93.3, a category of neurological illness. But there remain the problems: (1) some psychiatrists and others contest this classification of CFS as a neurological disorder, (2) "fatigue syndrome" is listed in ICD-10 as F48, a mental disorder - which creates the apparent anomaly that "fatigue syndrome" is a mental disorder, but "chronic fatigue syndrome" is a neurological disorder, and (3) the classification of CFS as a neurological disorder does not seem to be fully integrated into ICD-10. As far as I have discovered this seems to be the only reference to CFS in all the relevant ICD -10 volumes. For example, CFS is not mentioned in main Volume 1, the Tabular List, of ICD-10 - where one would expect it to be - nor is it included in the current (2007) online version of ICD-10.

(This means CFS is indeed classified as a neurological illness at G93.3 along with ME, and PVS, but as it is not accepted by psychiatrists, they are trying to re-classify it to justify their treating it as such to this point in time. "Fatigue Syndrome" and "Chronic Fatigue Syndrome" are classified differently since they are not the same illness. CFS is mentioned in Volume 3 at G93.3 that classifies it with ME and PVS, making them all the same illness.
The only reason there is a problem between doctors and patients, is that doctors will not accept the classification of ME/CFS as a neurological illness. Even though it seemed very neurological when Sophia Mirza was sectioned for ME/CFS, died due to psychiatric treatment and her spinal root ganglia was found to be inflamed and CFS was put on her death certificate.
Sophia Mirza is said to have died from M.E., but when pathologists were putting the illness on her death certificate they fought about the semantics of ME versus CFS, as to which term was modern. They did not disagree on the disease, only the name. In the end, the pathologist put CFS as on Sophia Mirza's death certificate. She was not the first to die from this treatment, and nor will she be the last unless it is stopped. )

It is also true that the WHO gave permission in 2004 for the UK adaptation of the WHO primary care management and diagnostic guidelines on mental health, which in this edition expanded to include some common neurological conditions.
This edition of the good practice diagnostic and management guidelines follows the ICD-10 Index code for CFS as G93. It remains to be seen, however, whether this practice will be followed in ICD-11.

(Is that perhaps, because psychiatrists would like it to be reclassified as a Mental Disorder in order to cause more death Dr. Sykes? Given that psychiatrists and G.P's in the UK are currently not treating ME/CFS as a neurological illness, how likely is it to change if the classification remains the same? )

2.3 Achievements in relation to CFS

As already mentioned, the focus of the project was on the whole field of Somatoform Disorders, rather than on CFS. Nevertheless, three of the recommendations made and two of the issues highlighted are important and relevant to the classification of CFS. They bring out considerations which undermine the case for classifying CFS as a mental disorder and so implicitly support the case for classifying CFS as a physical disorder.

The first of the three recommendations is that the subcategory of Undifferentiated Somatoform Disorder" is deleted. This is the main
subcategory or "pigeonhole" in DSM-IV where some psychiatrists have wished to place CFS.
(See also Note 3)

(As the WHO has not classified CFS as an Undifferientiated Somataform disorder, why is it being treated as such?)

The second recommendation is that, if the category of Somatoform Disorder is retained, some kind of "psychological" criterion should be added to the existing characterization of Somatoform Disorder. This recommendation takes the debate to a deeper level and is somewhat technical. But its immediate effect is to make it more difficult to classify CFS as a Somatoform Disorder. It also has afurther, more subtle effect, in that it raises an additional difficulty about the whole category of Somatoform Disorder. Because finding an adequate psychological criterion is likely to prove very difficult, this recommendation in effect adds another argument in favour of dispensing with the whole category of Somatoform Disorder (within which is the subcategory of Undifferentiated Somatoform Disorder) and so removing the suggested pigeonhole for CFS.

The third recommendation is that, if possible, language that gives offence to patients should be avoided. This recognition that the perspective of the patient should be taken into consideration could lead to discarding terms suchas "pseudoneurological", "doctor-shopping" and similar derogative terms which have been applied to the symptoms and behaviour of people with CFS.

(Perhaps if patients were treated from the beginning according to the existing WHO classifications, patients wouldn't have taken offense in the first place, and "Dr Shopping" would have been avoided as Dr's would have done their jobs in diagnosing a serious physical illness rather than pushing patients hard enough to hurt themselves.)

The first issue that that was placed clearly on the agenda for discussion was whether the whole category of Somatoform Disorders should be abolished. Since the abolition of the whole category would remove a pigeonhole for CFS, this is clearly very relevant.

(Relevant to the fight by psychiatrists to make ME/CFS a mental disorder. If the pigeonhole for CFS goes, how will psychiatrists treat CFS patients? Oh wait, they could treat them like they are supposed to according to the WHO ICD 93.3 as a neurological illness)

The second issue that was highlighted was the extent to which the views of patients should be taken into consideration in drawing up formal classifications of disorders. Until very recently the classification of disorders has generally been considered a purely professional issue. Since patients with CFS tend to have strong views that CFS should not be considered or classified as a mental
illness, this is also very relevant.

(It's relevant to patient's because it has never been classified as a mental disorder, so there is no reason for CFS patients to be fighting to not be treated as having a mental disorder when they are already classified as having a neurological illness. Rather Psychiatrists are fighting for it to be a mental disorder, with absolutely no evidence that it is one.
Patients perhaps do not want to see it classified as a mental disorder given 50 years of evidence that it is indeed physiological and not psychological. That is of course unless you believe you can catch hypochondria from a blood transfusion or donated organs? If CFS is a mental disorder, why is it being treated with the same drug for AIDS? Is hypochondria transmitted?)

2.4 Impact in relation to CFS

Although the focus of the project was Somatoform Disorders in general rather than CFS, the project is likely to have significant influence on the classification of CFS. Some of the difficulties in classifying CFS as a Somatoform Disorder, and hence a mental disorder, are now appreciated and debated by a large number of the leading experts in the field, several of whom are on the relevant committees that will debate and construct the next revision of DSM-IV. The issue of patient participation is clearly on the agenda and it seems reasonable to expect that the views of patients will be given greater weight than in the past. I was able to make limited personal contributions to this process in discussions with individual experts and with papers presented at international conferences.

In bringing out objections to classifying CFS as a Somatoform Disorder, the CISSD project will have strengthened the case for classifying CFS as a neurological disorder.

(Perhaps psychiatrists are having difficulty classifying ME/CFS as a mental disorder, given there is no evidence to do so, and it has been classified as neurological for a reason for decades. It has never been classified as a somataform disorder in DSM or WHO ICD and therefore any psychiatric treatment of patients with ME/CFS for ME/CFS is malpractice. You might consider giving some weight to science, which has already shown it is not a mental disorder. The debate from psychiatrists to make it a mental disorder is only for the benefit of insurance companies and psychiatrists, NOT for the good of patients. What would be good for patients is if Doctors followed the current ICD 10)

"Three of its recommendations are relevant and important for CFS and strengthen
the case for classifying CFS as a physical rather than as a mental disorder.
Two of the key issues highlighted are also very relevant and important for
CFS.

The work of the CISSD project has strengthened the case for classifying CFS
as a neurological disorder, rather than as a mental disorder."

(Again, why does there need to be a case to strengthen the case of classifying CFS as a physical disorder rather than a mental disorder, given that it has been classified as a physical disorder for decades? )

"Note 3. The situation is more complex in ICD-10, since ICD-10 includes,
besides Somatoform Disorders, a further possible pigeonhole for CFS/ME. This is the
subcategory of "Neurasthenia" which ICD-10 includes in addition to the category
of Somatoform Disorders. While the project did not specifically address the
problems associated with Neurasthenia, there are some strong objections to
this subcategory and it is possible that Neurasthenia will be omitted in the next revision of ICD-10

(And what does Neurasthenia have to do with ME/CFS anyway? ME/CFS is already classified as a neurological disorder. Who wants to "pigeon hole ME/CFS as a mental disorder? Who benefits from it? It's certainly not patients. In the UK they are already being treated for ME/CFS as though it is a mental disorder, and some are dying because of this. Why would the World Health Organization that has recognized ME/CFS as a physical disorder since 1969 reclassify it as a mental disorder? What evidence do psychiatrists have to even back up their argument? Their treatments are making patients sicker, and in extreme cases like Sophia Mirza's killing them. Why is there even a discussion happening about reclassifying a disease that can be caught from blood transfusion, can happen as the result of oubreaks, and that won't allow patients to donate blood or organs be a mental disorder? Why would scientists and Dr's perscribe Ampligen, a drug used for AIDS patients for ME/CFS patients if it's a mental disorder? Or did Aids become a mental disorder when I wasn't looking?
Chronic Fatigue is not the same as Chronic Fatigue Syndrome. Chronic Fatiue Syndrome is the word used for M.E. in the U.S. because M.E. does not exist there. The terms are used interchangeably in Canada because they are the SAME. The reason there is a strong case for CFS being a neurological disorder is that psychiatrists are using semantics to attempt to "pigeonhole" it into something they can treat for their own gain. Yes, you do need to listen to the patients you are hurting. However, you might also consider looking at the science of ME/CFS. Read 50 years of papers on the scientific basis of ME/CFS. )

Comments in bold were made by Andrea Martell. The full document written by Dr. Sykes can be found at http://www.blueribboncampaignforme.org/CISSD_Project.html . It was provided by http://meagenda.wordpress.com/

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If A Tree Falls In a Forest...

andreyam@gmail.com (BlueRibbonsForME) — Tue, 02 Jun 2009 07:39:00 GMT

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If a tree falls in a forest, and no one hears it ... does it make a sound? To the chronically ill, this is more than just a philosophical question.

We are people living out of the loop and our connection to the rest of the world can be tenuous. Some of us have more of a social network and some of us have less.

Some people with a chronic illness are very much alone.

Most people don't want to hear the long descriptions of symptoms, the loneliness, the feelings of isolation and alienation. They don't want to be the sounding board for the person who feels they've lost any normal semblance of having a "witness" to their life and existence.

The invalid is very self-absorbed. They have to be. It is a full-time job rebuilding their life and they can't afford NOT to be very, very focused upon this. And they will repeat, and repeat and repeat the things that they need someone to hear.

When the sick one has a revelation, and no one wants to hear it, they are lessened. Their sense of self, of their place in this world, becomes precarious.

I remember being told by a well-meaning friend a few years ago, that I should not think that my value as a person was any less now that I was not able to "produce".

But she was wrong.

Should my value be less? Should my life be less significant than the life of someone who is healthy and productive, connected to others through activities, who makes an impact on the world and other people? No, of course not. But it is less. I started out believing otherwise but over the last four years, I have had it pounded home to me.

In a family gathering, the sick kid may be in the background, on the outskirts. He is the least able to draw attention to himself, because he is weak and easily tired. And he has, really, very little to say. He has no stories about school or work to tell. He has no achievements to share and be praised for.

His biggest achievement lies in the fact that he managed to get out of bed and dressed, and now is curled up in a corner of the couch, while the people around him share their normal life.

Lucky is the sick person who has a champion in their corner. And that champion is likely carrying a heavy load. Because the sick one has a great need to be heard. To be affirmed and acknowledged. To talk about their symptoms, their fears and their hopes. They fear that, like the vampire, they have no reflection. They do not have an effect on the world around them. They throw a pebble into the pool and the ripples are so insubstantial that ... they fear that they may be disappearing. And that they may disappear without anyone even noticing.

That's why I'm here. Because I fell, a long time ago, and I want to be heard.

Can I get a witness?

Reprinted with permission from http://www.ncubator.ca

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Testing Prof. Kenny de Meirleir's test - By Ciaran Farrell --- A must read

andreyam@gmail.com (BlueRibbonsForME) — Sat, 30 May 2009 08:40:00 GMT

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This was written in reaction to tinyurl.com/kn246t That Dr. De Meirleir has discovered a test for M.E.

May be reposted

Medical tests for a specific disease need to be an accurate and reproducible
means of establishing the unique pathophysiology of the disease concerned

I have a scientific background and I have studied the contents of the
presentation made by Professor Kenny de Meirleir. His hypothesis is that
high levels of hydrogen sulphate in the urine may possibly be diagnostic of
the presence and or overgrowth of relatively certain common microbes living
within the gut. This he then claims produces the symptoms of Myalgic
Encephalomyelitis.

This is not a new idea; it is a new variant on the "leaky gut" hypothesis
that has been around for some time and has been associated with the Candida
overgrowth hypothesis of ME which produces the same kind of "leaky Gut" in
which candida travels through the gut and invades the body through the gut
walls. This hypothesis has been largely discredited although it still has
its supporters.

The current hypothesis follows much the same lines, that the micro organisms
that ought to be contained within the gut are somehow able to penetrate the
walls of the gut and end up just about everywhere in the body including the
brain.

There are a number of problems and issues here which can be summarised but
are not limited to :-

1] How can such organisms penetrate the gut wall and invade the
body in the manner claimed, as this was the Achilles Heel of the previous
Candida hypothesis?

2] Assuming that it is possible for these micro organisms to
invade the body in the way Prof. Kenny de Meirleir hypothesises, then the
person would be suffering from a very nasty case of infection by one of the
micro organism concerned, and not ME, since all the micro organisms cited by
Prof. Kenny de Meirleir are already known to medicine and medical science,
and this would be picked up by a battery of microbiological tests which
would confirm the presence of a bacterium as being the cause of the
infection suffered by the patient. Not all the organisms concerned are not
that easy to treat and some can be resistant to antibiotics, but diagnosis
and treatment are relatively strait forward. This leads to the academic
scientific question as to whether certain levels of some of these microbes
live in the gut anyway, and speculation as to what would lead them to cause
an infection.

3] That in order for a given specific disease to be produced
through the invasion of the body by a specific microbe, there must be an
equation made between the microbe responsible and the disease. One cannot
have the same disease produced by an unspecified number of certain specified
and also by other un-named and or un-specified microbes because this would
simply be termed a general bacterial infection. It would not be ME.

4] That in order for a diagnostic test to detect the presence of
a given single microbe or family of microbes a given test must detect the
microbes concerned in the presence of other microbes which may be harmless,
or not the subject of the test, and therefore the test will not produce
false positives results when applied to samples taken from patients. There
is no indication that the proposed test will do this.

5] That in order for a diagnostic test to detect the presence of
a given microbe or family of microbes it is necessary for the test to have a
given provable and reliable sensitivity to the organism it is intended to be
a test for so that medics and researchers can have confidence that if the
test says that there is nothing there, then that is indeed the case. This is
to avoid the problem of false negatives. There is no information whatsoever
from Prof. Kenny de Meirleir on this subject, so I can only assume that the
proposed test does not meet the stringent standards of any national or
international Health Board. This is presumably why the test is not being
marketed to doctors or to governments or Health Boards, but only to
individuals.

6] That in order that for a diagnostic test to be accepted as the
means of diagnosing a given disease it must be accurate, and it must be
reliably accurate to a very high standard so that again medics and
researchers can have confidence that the test really does do what it claims
it can. Again, there is no information whatsoever from Prof. Kenny de
Meirleir on this subject, so I can only assume that the proposed test does
not meet the stringent standards of any national or international Health
Board. This is presumably also why the test is not being marketed to doctors
or to governments or Health Boards, but only to individuals.

Lastly but by no means least, the theory behind the test must be based on a
unique aspect of the pathophysiology of the disease because only then can
the equation between a given specific microbe and a given specific disease
be made. In order to be in a position to make this equation the theory which
underpins the use and application of any diagnostic test must account
directly for the disease process itself and not be a consequence or artefact
of that disease process that could be produced in other ways.

I consider that Prof. Kenny de Meirleir's hypothesis and Hydrogen Sulphide
diagnostic test based upon it fails this test on the grounds listed above
and for the simple reason that he has not accounted for the well known fact
that patients with ME/CFS/CFIDS are known to have compromised immune
systems. This would mean that as with HIV/AIDS patients who also have
compromised immune systems that there is very considerable likelihood that
in ME/CFS/CFIDS patients the presence of the microbes that Prof. Kenny de
Meirleir observes and the numbers in which he observes them are simply due
to the secondary consequences of having ME/CFS/CFIDS as a result of
opportunistic infections by microbes that would largely be kept at bay by
the body's immune system in a healthy person.

I note that Prof. Kenny de Meirleir has been a controversial figure when he
served as a Board Member of the American Association for Chronic Fatigue
Syndrome, and editor of The Journal of Chronic Fatigue Syndrome put out by
The Haworth Medical Press and that the Board of The National CFIDS
Foundation, Inc. (NCF), in America, called for his resignation as the result
of his previous research activities

I also note that Prof. Kenny de Meirleir's recent work on this matter is not
published in a Peer Reviewed Journal, and that he does not appear to have
any plans to publish his work in such a journal, possibly because his work
on this matter may not reach the standards required by such journals.

I further note that Prof. Kenny de Meirleir is one of the Editorial Panel of
the proposed new Journal of Fatigue where presumably he would be able to
publish this work as presumably this journal does not have the same status
and standing as a regular Peer Reviewed journal, and he would be standing in
favourable judgement over his own work.

In view of the entirety of the above, my advice would be to think long and
hard before committing £13 or any other sum of money to buy the home testing
kit proposed by Prof. Kenny de Meirleir or on whether to have the test
performed in any other way, and I would be very wary indeed of any treatment
options that may be advanced by Prof. Kenny de Meirleir on the basis of a
positive test result, or the consequences of a negative test result.

Ciaran Farrell

Myalgic Encephalomyelitis sufferer

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Reeves Presentation at CFSAC Meeting -by Khaly Castle

andreyam@gmail.com (BlueRibbonsForME) — Fri, 29 May 2009 02:36:00 GMT

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May 27, 2009 -

I was able to catch a small portion of the CFSAC meeting on May 27. Most interestingly, I was able to hear Dr. Reeves’ presentation in
full, and the follow-up testimony of several CFS advocates/sufferers. Following is what I heard of Reeves' presentation, with actual
quotes in “quotation marks“, and my own asides, thoughts and comments in (parentheses).

Dr. Reeves’ presentation lasted approximately 40 minutes. He started out by saying he would give us an update on the results of the
peer review and moving forward. He said that he would discuss the draft of the 5 year strategic plan, calling it a “complex topic”. He said he would explain the current CFS program, discuss the logic model that’s in the handout, go through the current version of the draft, putting it into context with the peer review and stakeholders meeting, and the recommendations that this committee has made.

(The first important thing to note is in regards to the external peer review panel. The CFS Advisory Committee recommended the peer
review idea, and actually recommended some potential members. The CDC chose 5 members, one of whom is Peter White, a U.K.
psychiatrist. This is important, because the UK has formed its national health plan response to CFS based on the work of Simon
Wessely, Peter White, et al., who have totally psychologized the disease. If you have watched Reeves over the years, you can see that
he has steadily been steering the U.S. response to CFS in the same direction - It’s All In Your Head.)

Dr. Reeves said the the “program objective is to devise control and prevention strategies, and improve the quality of life of sufferers.
We are not NIH, we are a complementary agency.”

He went on to say that the control strategy model is rather simple - that there is the population of the world, and in that population some have CFS. Among those who have CFS, there is more than one subtype. “We need to get these people to interventions. Their illnesses need to be evaluated and managed. We must take subtypes into account. We must decrease the burden CFS poses on the
population, decrease impairment, and decrease economic impact.”

He said that the CDC needs to address the barriers to access to healthcare. But on the other hand, patients actually have to utilize that healthcare. Thirdly, patients have to receive appropriate care.

“What do we think CFS is?” Dr. Reeves asked. “It’s a complex illness, with alterations in complex homeostatic systems. It’s not the result of a single mutation or a single environmental factor. It comes from a combination of many factors: genetics, gender, stressors, immune stressors all interact.”

Reeves then showed a slide with a diagram. He said, “This is our current model. You see the brain in the middle. Around the brain,
stress is involved, traumatic childhood stressors, allostatic load maladaptation to stressors, genes interact with one’s reaction to stress,
autonomic nervous system, orthostatic intolerance, immune activation..”

He went on to say that all of these things go in both directions (meaning that these things contribute to causing CFS, but CFS
contributes to all of these things.) He then mentioned that acute and latent infections that may reactivate with various stressors, and
that diet and lifestyle are important, again in both directions.

(Notice that the very first things he mentions in his model are childhood trauma and allostatic stress loads. In other words, we do not
know how to handle stress. The third thing he mentions is genetics, but notice how he ties genetics to stress - not to susceptibility to adisease. This is all leading up to psychosomatizing the disease completely, a path he has been on for many years. But wait…there‘s more…)

Dr. Reeves moved on to discuss the CDC’s CFS research strategy.

He said that population studies “let us look at risk factors, the clinical course of illness, to be able to tease out subtypes. We measure
biomarkers in our population studies, as well as knowledge, attitudes, and beliefs.”

(This leads us straight to the “improper sickness behavior” component of the “allostatic stress load” theory.)

He said that the goals are the same in clinical studies. As far as laboratory studies go, he said that “nothing we do doesn’t have a lab
component.”

Dr. Reeves said that the goal of education activities is that “we have to change attitudes, knowledge, beliefs, and treatment patterns.”

Next, Dr. Reeves wanted to discuss the Logic Model that his team has developed. He said that the reason for a logic model is that it
‘allows you to put strategy and tactics into perspective, outline goal and measure success.”

In the logic model, there are inputs, outputs, and outcomes. He discussed them as follows:
Outcomes: “We want to reduce population morbidity and improve quality of life for patients.”

Inputs: “These are activities, what we actually do. It is not a trivial illness. Congress realizes and appropriates money to study it.
Advocates, academia and pharma, these are people we can partner with to do it.”

Outputs: “Knowing the burden of the disease, knowing the “knowledge attitudes and beliefs” of sick people, their families, physicians,
ets., education, the cfs website…”

“The only outputs we really haven't gotten to yet is therapeutic targets.”

Dr. Reeves went on to discuss CFS publications. He said that there are 136 peer review publications, 4 manuscripts in press, 10
manuscripts in review. “This is how science is done“, says he. “Who reads them and who have they influenced?” he asked. He said that there are about 3000 or so publications on Pubmed on CFS. About 1600 in other journals reviewed by ISI. He noted that the “only
group that has more in the world is the United Kingdom.”

Dr. Reeves then moved on to the Case Definition.
He said that the newly defined illness was first defined in 1988 (Holmes)
It was then redefined in 1994, and this definition is currently the international standard. (Fukuda).
He says this is the reference standard, but has it problems. Because of that, he says, an international group worked toward
streamlining this in 2000, and it took 3 years to streamline the 1994 definition into an operational guideline. (This is how we got what isbeing referred to as the “Reeves empirical”, which basically eliminates all of the very sickest of us, and the original Incline Village
cohort….and yet includes people with mood disorders only.)

Reeves said that the revision recommends standardized instrumentation to measure frequency, occurrence, and duration of symptoms.
(Doctors are having a hard time actually obtaining these instruments, or at least, Dr. Bell is, as he complained to the CDC).

Dr. Reeves then stated that provider knowledge, attitude, and belief is higher than 10 years ago.

Dr. Reeves moved on briefly to the peer review executive summary. He said that the CDC is using their comments to frame the
program, but that the bottom line was that the peers liked the current program and had endorsed the 5 year strategy.

He did make a comment on the criticism of the 2005 publication of operationalizing the 1994 Fukuda definition of CFS. His comment
was that the CDC leads the world in defining this illness, and that it was not an attempt to rewrite the 1994 Fukuda, just an attempt to
operationalize it.

Clinical guidelines was the next topic.

Dr. Reeves said that the biggest flaw in studies is that in cross-sectional studies, patients have only been sick 5 years. He said that the CDC was developing collaboration with the Mayo Clinic to use Rochester epidemiology, because local people use the Mayo Clinic frombirth to death. That would give complete birth to death medical records on CFS patients, so that researchers could look back to seewhat happened to some of these people as kids, what kind of traumas they may have had, and what happens to the clinical course when they get it and go on. (Again the emphasis on the inability to process trauma).

Dr. Reeves then brought up the April stakeholder meeting - he said that “I’m not trying to be funny, but the response was very
impressive, given problems with travel/economy/illness.”

He noted that 8 people testified in person, and 30-something testified by phone. He said that leading up to that meeting and
subsequently, up until the present day, he had received around 350 or so emailed or written comments, many from some of the same people who testified. He said that this does make it move difficult to say that 90 percent of stakeholders feel this way or that way, because it’s all one person, basically.

He said that some of the issues that the stakeholders brought up were that:
Communications with the CDC had not been optimal
The case definition was a high concern
Pathology, biomarkers and sub typing, infectious agents, needed to be researched
Management and treatment of the disease needed to be addressed
Collaboration and data sharing needed vast improvement.

Reeves noted that these were the same types of comments that have been raised by the CFSAC, physicians, etc., so fair
representation of concerns were addressed.

Next, Reeves moved on to the topic of “moderators”, or things outside of what one can control, whether they be good or bad. First he
mentioned some “good moderators”:
He said that funding had been quite available to the CFS research program.
He said that credibility is increasing, making research easier.
He said that from 1992 to 1999, funding was only 3 to 4 million per year, so they only focused on a few things, but that from 2000 to
2005, due to payback funding, “we were able to do the Wichita study, collaborate with the CFIDS Association of America, do a pilot
national survey, funded one of the best post-infectious disease studies, and cytokine studies”. He went on.

He said that now that payback is over, funding is decreased again.

The CDC has been doing a cross sectional study in Georgia, and have been following the CFS population there. There were a series
of workshops, he said, from 2000 to 2002, studies that show that the CFS construct is real, internationally. Across the board, he says,
in every country, the CFS construct is “Fatigue plus 8 magic symptoms, so the empiric underpinning is good”.

Then Reeves talked about “hindering moderators” or, as he put it, “what can one do with what one has. Economics is a problem for
everyone”. He said that from 2000 to 2005, during payback, the budget averaged at about 7 million a year, but now we are back to
abut 3 to 4 million a year. He said that this represents a real 50 percent decrease, but then you have to factor in inflation.

Also, he noted, “we need to get more involved in more collaborations, working with others. Not just giving them money. We need to work together toward common goals with pharma, academia…” (I read this as, we want our hand in all research being done by anyone so we can control it)

Dr. Reeves then discussed the CDC’s Vision:
He said that he believed that the CDC had successfully focused on obtaining baseline information. So in moving forward, the strategy is to focus on 4 goals:
(This is the 5 year plan)

1. Refine understanding of etiologic pathways to improve diagnosis and identify therapeutic targets. Reeves said that “Psychosocial,
clinical and biological markers must be identified.” (note that the first thing is psychosocial) He also noted that we must identify risk
factors, and used major depression disorder as “an extremely good example of this,another complex illness with subsets.”

2. Improve clinical management of CFS patients by providing evidence-based education materials that address evaluation and clinical management of CFS

3. Clinical intervention trials

4. Move CFS into the mainstream of public health concerns.

(I had to take a break and missed a little bit)

Finally, Dr. Reeves discussed upcoming activities, including an international workshop on clinical management. He noted that the “UK already has this integrated into their healthcare system”. (You bet they, do right in the psychiatric sector, with CBT and GET as the
therapies)

Reeves then mentioned that there is a CBT/GET trial in the process of being planned in Macon with the collaboration of the “UK group
and the Mayo Clinic”. (That is scary. As Mary Schweitzer points out in subsequent testimony, Peter White, proponent of CBT/GET and
representative of the UK group, has stated that CFS is caused by too much rest, leading to debilitation, and that no medical treatment
is necessary or appropriate: the only treatments should be Cognitive Behavior Therapy and Graded Exercise Therapy)

Reprinted with permission from www.cfsunited.com/blogseditor.html

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