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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

        

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