BLOG.BLUERIBBONCAMPAIGNFORME.ORG: Recent Comments

Comment on ME/CFS Awareness Day- ME/CFS is not a mental illness

2010-03-09T09:28:20Z

Just to remind you that if you or your readers would like to blog for ME/CFS Awareness in May 2010 to please sign up to the list at http://meaware.wordpress.com so we can collate a list of those who are blogging for ME/CFS Awareness this year.

Thanks

Rachel

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

2010-03-07T14:34:14Z

Following my very recent diagnosis of ME/CFS, I have set up a blog to help me cope and of course to communicate with other people in a similar situation.

Comment on Kicking of ME/CFS Awareness Week---Wear your blue ribbon to show support!!

2010-03-06T07:34:38Z

I will read time to time that..

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

2009-12-29T13:58:51Z

You have misrepresented the "hypothesis", such as it is. The micro-organisms do not spread throughout the body. They cause excessive Hydrogen Sulfide, which binds to heavy metals, and it is these toxins which supposedly pass through the gut wall. How the Prions fit into this is not at all clear from the slides available. It's confusing stuff alright, and not the way science is done, but if you're going to criticise it at least don't misrepresent the "hypothesis" - the waters are muddy enough ! Your skepticism is entirely warranted until this material is published in a peer-reviewed journal.

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

2009-11-23T10:56:48Z

Dear Fellows:

As time goes by, my experience with Dr. De Meirleir's Test and knowledge grows fast. I'm one of the very few physicians in the world that have received a large number of tests for clinical evaluation. What can I say after testing around 100 patients? Again, it tests POSITIVE in 98% of symptomatic patients, and NEGATIVE in 94% of asymptomatic young people. 6% of asymptomatic people present a weak POSITIVE result, mainly people above 45 years old.
Also, half of my patients have improved with long term antibiotics alone, followed by vitamins; and 10% got completely asymptomatic.(!)
Regarding metal chelation, I DO KNOW it is fundamental for anybody bearing elevated H2S in blood/urine. But it is quite expensive, and its clinical results are difficult to evaluate. I have 14 patients under chelation now.
In fact I DO BELIEVE chelation is good for all people above 40; and I'm under chelation myself, although not due to fibro/ME symptoms; but because my blood LEAD is higher than normal.
The real PROBLEM is what causes dysbiosis and bacterial H2S overproduction. I've discovered FOOD INTOLERANCE in a few patients; and bowel inflamatory disease in many. But 20% puzzle me: they have absolutely no gastrintestinal complaints.
Now I'm trying a fascinating new natural treatment that COMPLETELY SUPRESSES H2S PRODUCTION in bowel. In 40 days I'll have the results over 24 patients. If they get better and their NM-H2S TEST become NEGATIVE; we must have discovered something really useful after De Meirleir. In fact, he is curious about my treatment method. I'll let him know; I'll let you all know.
Again, the truth will prevail - TIME IS THE LORD OF REASON.
Thanks for your attention.

Comment on WPI announces XMRV test kits through vipdx labs

2009-11-06T13:54:23Z

REMOVE WILLIAM REEVES FROM THE CDC/CFS PROGRAM. ACTUALLY, REMOVE CFIDS FROM THE CDC AND MOVE IT TO ANY OTHER FED OR PRIVATE ORG. THE CDC HAS MESSED UP SO MUCH THEY CAN'T BE TRUSTED.
Thanks for this reporting. Went to the WPI site and yes, there was the press release and then on to the site itself and saw the other tests available. Very interesting, all of it. Thanks!

Comment on ME/CFS Awareness Day- ME/CFS is not a mental illness

2009-10-26T12:04:10Z

Who can define the meaning of being normal? I believe there is no possibility to create a parameter in such a diverse society. We do follow some patterns inhered in our learning and social interaction, which can be also called morality, social norms or behavioral standards. But when it comes to define what is or what is not normal, perspectives can get ambiguous and contradictory. As individuals we each decide what we consider normal, and that usually happens according to the associations that we’ve learned though life. This can be also explained by the behaviorism theory and cognitive science, an interdisciplinary study of mind and intelligence that approach our learning perspectives. This topic was vastly approached by Dr. Maurice F. Prout, psychologist and Ph.D. with expertise in cognitive behavioral therapy. Many of his articles and publications (which can be found at www.MauriceProutphd.com), deepens this theme and also gives many interesting studies on psychological disorders.

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

2009-09-19T09:59:05Z

This article by Jacob Teitelbaum is pertinent to this discussion:
http://www.ei-resource.org/expert-columns/dr.-jacob-teitelbaums-column/smelly-gas-a-clue-to-cfs-testing-and-treatment/
Link not intended as endorsement for Dr J, but useful info re H2S.

I live in Australia.
A few years ago I became very frustrated with my doctors, who attended some workshops for health professionals, where Prof de Meirleir was one of the presenters. My doctors seemed never to learn anything helpful/useful (treatment-wise) from these workshops.
Then I had the chance to attend a presentation by Prof de Meirleir. I attended the presentation armed with several questions related to findings that are attributed to Prof de Meirleir, but for which more information is needed before the findings can have practical use in a treatment setting.
I discovered why my doctors never learnt anything useful, for application to treatment, at prior workshops. There was nothing concrete presented. Everything seemed to fall back to "buy my tests" as the starting point.
I gather none of Prof de Meirleir's tests currently have strong scientific validity, and many are quite expensive, so I understand why doctors are reluctant to recommend the tests to patients.

I guess it becomes caveat emptor. We, the patient, must choose what to spend our money on in search of recovery.

The CFS patient-community can help itself by organising a centralised "results of tests" location online. I have found a couple of blogs where people posted their H2S test result, sometimes with the results of a second non-CFS person for comparison.

If melissa is still following this discussion I would be very interested to hear what treatments Prof de Meirleir used that were effective for her and her son. There is no scepticism what so ever in this request. I fully accept that Prof de Meirleir has helped melissa.

I follow Carlos's blog: http://pochoams.blogspot.com/
Carlos had some consultations with Prof de Meirleir, but the treatment was not helpful for Carlos. No doctor can achieve 100% results.

It is thought that there is commonality of cause between autism and some cases of CFS (de Meirleir is one of the proponents of this, and, based on my own case of CFS, I agree with the idea). Hence my interest in what treatments were helpful for melissa and her son.
For my own treatment I follow principles of autism treatment - chelate heavy metals, promote glutathione production, support methylation cycle ...
I also find the low fructose diet very beneficial:
http://www.coeliac.com.au/Fructose-Malabsorption-Guide.html
http://sacfs.asn.au/download/SueShepherd_sarticle.pdf
Currently all cases of CFS are ill-defined due to inadequate diagnostic criteria. This is an area Prof de Meirleir has tried to improve, via categorising cases according to certain biochemical markers. However, as commented above, I am unclear how scientifically valid his tests are, even for distinguishing different classes of CFS.

Comment on DIARY OF AN M.E. SPOUSE

2009-09-16T03:17:54Z

Thankyou for the feedback :) I'm glad it is helpful.

An update since I wrote this. We are now 11 years together, over 7 years with this illness for my husband. He struggles a lot with daily brainfog, and constant pain. We live more rural now away from pollution, but he is too tired to enjoy life much. We have a 4 year old son, and our daughter is now 8 years old. We homeschool them. I have since been diagnoased officially with serious adult ADHD. it's a struggle some days with my scatter brain and his brain fog.

the hyperlink to the actual article is different now. http://nurturedmother.ca/superaddmom/cfs/

people with cfs/ME cannot advocate for themselves, because they are too busy trying to actually do normal things, like have enough energy to put on their own socks.

Anyone who would like to share their CFS stories with me can find me on facebook as Ril D Giles with the mamaril@gmail.com address.

I'm writing a book. called "Living with ME". Please add me to your fb if you'd like to be involved.

Comment on What it's like living with ME/CFS - From interview with theJayandJuggyshow.tv

2009-08-21T07:59:27Z

Hi,

Good post....Which is the cheapest video card available in india just to connect pc to tv using s video out?