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    CDC reassigns controversial head of chronic fatigue research

     

    By JIM WALLS and KATE BENSON

    The Atlanta-based CDC has reassigned its chief researcher into chronic fatigue syndrome, a longtime target of scientific organizations and patient advocacy groups around the country.

    Researchers in Nevada last fall reported a strong correlation between chronic fatigue syndrome and XMRV, a retrovirus related to the one that causes AIDS. The potential breakthrough has excited the 1 million or so Americans with CFS who are looking for treatment.

    The CDC’s research program, led by Dr. William C. Reeves, had no role in that study, and Reeves was dismissive of its findings. Critics said that was because the agency had wasted $100 million on looking for a possible psychological explanation for CFS and dismissing outside research that looked for a viral cause.

    Finally, last fall, a CFS Advisory Committee called on Health and Human Services Secretary Kathleen Sibelius to install “progressive leadership” to direct CDC’s efforts to find a cause and cure for the disease. The panel did not identify Reeves as the obstacle, but minutes show the committee had discussed whether to name him.

    The International Association for Chronic Fatigue Syndrome, a 500-member group of medical professionals, has repeatedly challenged CDC’s focus and its new five-year plan for CFS research. Its president, psychologist Fred Friedberg, testified in October:

    “After 25 years (and over $100 million) of CDC research, chronic fatigue syndrome remains a stigmatized illness without substantive progress on public health policy or objective diagnosis and treatment. And their new five-year, $25 million plan fails to inspire any confidence that change will occur.”

    CDC spokesman Tom Skinner said today he had “no direct knowledge” of the reasons behind Reeves’ reassignment, other than the agency’s belief that his expertise was “a good fit” for his new role.

    “As far as his salary goes, it’s a lateral move for him,” Skinner said.

    Starting Feb. 14, Reeves will be senior advisor for a new mental health surveillance program that will explore how various diseases and conditions affect mental health. Virologist and cancer researcher Dr. Elizabeth R. Unger becomes director of the Chronic Viral Diseases Branch (CVDB), which includes the CFS program, on an interim basis.

    “Looking for a permanent director will commence as soon as possible,” Skinner said.

    The transfer comes on the heels of the CDC’s reassignment last month of Dr. Howard Frumkin, who had run the CDC division that deal with public health problems associated with formaldehyde contamination in trailers provided to victims of Hurricane Katrina. Frumkin became a special assistant to the CDC’s director of Climate Change and Public Health.

    CFIDS Association applauded the leadership change in the CDC’s research into the disease:

    “The CFIDS Association of America, other organizations and advocates have vocally supported new program leadership to effect a more robust research effort at CDC. This staffing change has the potential to significantly advance CFS research beyond the agency’s intramural program and to seize scientific momentum generated by recent discoveries.”

    ———————-

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    40 Responses to “CDC reassigns controversial head of chronic fatigue research”

    1. Kati says:

      Thank you for writing this great article in regards to Mr Reeves’s reassignment. Patients with Chronic fatigue syndrome are looking forward to new leadership and a new program for CFS withiin the CDC.

    2. Steve Eberhardt says:

      This gives hope to so many whose suffering has been dismissed.

    3. SharonS says:

      Bravo and well done! There is one paragraph that makes me just a little nervous about Reeves possible continued impact on CFIDS though:

      “Starting Feb. 14, Reeves will be senior advisor for a new mental health surveillance program that will explore how various diseases and conditions affect mental health. Virologist and cancer researcher Dr. Elizabeth R. Unger becomes director of the Chronic Viral Diseases Branch (CVDB), which includes the CFS program, on an interim basis.”

      Reeves had been using CFIDS money for research similiar to exploring “how various diseases and conditions affect mental health” – or rather the opposite, how mental health affects or creates the conditions for CFIDS. Reeves and his contractor, Emory MIND-BODY were involved in the research on genetics and how it affects the ability to cope with stress and an abusive childhood again creating the conditions leading to CFIDS. My fear is that although he is not running the CFS shop directly, he will still be able to have some impact on CFIDS research and keeping the CFIDS mental health stigma alive and well. Only time will tell I guess.

      Anyway, great reporting and much appreciated by those of us sick with CFIDS. Please continue to watch and report as we need good solid journalism like this report.

    4. gf1 says:

      Nice to see someone looking into the way CFS has been treated. It’s an interesting subject.

    5. Cort Johnson says:

      Thanks for this article. Dr. Reeves and the CDC program have underperformed
      over the past few years. Under Dr. Reeves tenure the budget for the CFS program is now significantly lower than it was 10 years ago. This is despite studies published by the CDC and NIH showing that the disease affects at least 1 million people, has very high disability rates and causes about $20 billion a year in economic losses.

      This is a major disease with major consequences for the patients, the vast majority of whom never recover, and for the economy yet both the CDC and the NIH treats it like a minor disease that effects few people. The willingness of the federal government to turn its back on so many ill people for so many years with is tragic. The federal government has effectively turned CFS patients into the ‘untouchables’ of the medical profession; they are too complex, too different, too ‘dirty’ for the gleaming research institutions of the land. Researchers contemplate working on them and shudder – meanwhile enormous numbers of people suffer and even die because of the timidity and callousness and sheer disregard from the officials who are supposed to be watching out for the nation’s health. The nation’s health is not their priority; they are career seekers interested in the next sexy thing.

      Dr. Reeves is gone – his program sank into irrelevance after Dr. Vernon left – but the bigger question involves whether the CDC is going to treat this disease as a real disorder that affects enormous numbers of people and causes great suffering or if it’s going to treat it like it causes nothing more than a sore throat.

      I

    6. Arabella Williamson says:

      Excellent article!

    7. caledonia says:

      The patients have been advocating against Reeves and the CDC psychologizers for years with no apparent effect. The WPI finds a strong association with CFS and XMRV. Reeves makes a disparaging remark in the New York Times. The CDC takes the project away from him and gives it to the retroviral lab. Now Reeves is leaving the CFS program and taking a lateral move.

      In my experience, when a corporation wants to get rid of someone, they first take important work away from them, then they will move them to another less important position with the same salary. They may be putting pressure on them to leave or retire altogether.

      Let’s hope that the CDC has seen the light and this is what is happening.
      fact the case.

    8. Celia says:

      Thank you for an excellent article! The following quote says it all about just how serious CFS is, for those able to read between the lines:

      “Researchers in Nevada last fall reported a strong correlation between chronic fatigue syndrome and XMRV, a retrovirus related to the one that causes AIDS. The potential breakthrough has excited the 1 million or so Americans with CFS who are looking for treatment.”

      How many other patient groups in this country would be thrilled to learn there is a strong correlation between their disease and a retrovirus related to HIV? Why, in fact would anyone be? Because the suffering with CFS is acute and the illness, as yet, uncurable, whereas the treatment by the medical establishment has been supercilious, categorizing CFS as a psychiatric problem, for which Dr. William Reeves, has been largely responsible.

    9. RM says:

      Thank you for writing this article!

      As a physician disabled by CFS the last several years, it is appalling the way the CDC has treated this illness. Many healthcare professionals and the public trust the CDC to research illnesses diligently and with good faith but the CDC time and time again violates this trust by misappropriating funds and not listening to/ not collaborating with other experienced CFS researchers. It’s not good science.

      People have lost years if not decades to this illness. CFS affects people of all ages but it is especially a tragedy for the young. People in their teens, 20s, 30s become ill, are unable to complete their college educations, start a career, start a family, live independently, etc. and instead end up disabled and dependent on the goverment when it is the last thing they want to do.

      I hope you do an in-depth article about the CDC’s treatment of CFS. If you need people to speak to, check out Cort’s site aboutmecfs.org. Not only will you get the view of sufferers, they can potentially refer you to scientists nationally and internationally. (I don’t have any connection with Cort other than reading his site.) For someone who has personal and professional experience researching CFS, look up Dr. Lenonard Jason at DePaul University in Chicago. This type of investigative reporting, if done right, can land you a Pulitzer prize.

      Thanks again.

    10. Phoebe Snowden says:

      Thank you for continuing to follow this very important story.

      I just want to add that Dr. Reeves has no mental health credentials (other than his professorship in Emory’s psych dept.). He is supposed to be a virologist, and was supposed to have been conducting viral research during his tenure in the CDC’s CFS program. Instead, he chose to undertake psychological research, and changed the definition of CFS and eliminated all biomarkers so that it would fit the population he was studying. Dr. Reeves was not conducting CFS research.

      While it is certainly a relief to see new leadership for the CFS program, it is disturbing that a virologist is now a senior advisor for mental health surveillance at the CDC.

    11. Rachel says:

      Thanks for this great article.
      I am desperate to know why Reeves was moved.
      Is it, as some people with CFS are suggesting, a position in which he can continue to push psychological/psychiatric treatments on CFS patients (even if they have a proven biological basis for their illness)?
      Or is it a ‘demotion’ in disguise?
      Did he jump or was he pushed?
      I hope you can find out for us…

    12. L. Dreier says:

      Thank you for this article. Please keep digging. Many are continuing to suffer and Reeves and the CDC need to be held accountable. Reeves needs to keep on moving, right out of the CDC where he will do no more harm.

    13. Katie S says:

      Thank you for covering this topic. As a British ME sufferer my fate lies in the hands of the CDC and their efforts to give XMRV a thorough examining. Keep shining the light on the CDC because we all need your voice to speak for us.

      Again, thank you, I look forward to reading more.

    14. Meg says:

      Thanks for this article. I look forward to all of the new information about CFS that will be coming out over the next few years.

    15. KC says:

      Thanks for the great reporting. There is hope for the millions dealing with this disease. We are hoping for innovative research to the causes of CFS. Please keep reporting

    16. FW says:

      Thank you for this important article!

    17. Gail says:

      Please keep digging and reporting. It is so important to so many people. Thank you, thank you!

    18. Tammie says:

      I just wanted to say thank you so much for writing this article! I hope that you continue to look into and report further on this topic. It is really important to so many of us.

    19. A says:

      Thank you for your excellent article.
      Heartfelt appreciation from over here!

      Phoebe Snowden said of Dr. Reeves:
      ” Instead, he chose to undertake psychological research, and changed the definition of CFS and eliminated all biomarkers so that it would fit the population he was studying. Dr. Reeves was not conducting CFS research.”

      Well yes. Exactly.

      …Such a terrible disservice to many of us who have suffered decades with this debilitating illness. An illness that turns bright, often high achieving, vibrant people into ghosts of their former selves.

      A new era begins. Lets hope Dr. Reeves and his psychologizing like, are not in a position to muddy our water any longer.

      A

    20. Mark says:

      Very well done.

      This is just the tip of the iceberg. There is something inexplicable going on with ME and other ‘mysterious’ diseases.

      The same issues effect those of us in the UK and continental Europe. No proper research being done and government funds thrown at psychiatrists. Any reasonable person would think that governments would be anxious to find a cure, for no other reason than the costs to society. But no, there must be some reason they want to consign us to the dustbin.

      Please keep up the good work.

    21. pp Mary M. Schweitzer PhD says:

      CDC Research on CFS: Open Deception
      • Posted by Mary Schweitzer on February 7, 2010 at 7:00pm
      http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1002b&L=co-cure&T=0&F=&S=&P=823

      What this post contains is deliberate deception by the CDC – in refereed journal articles and when speaking to the press.

      I’m tired of sending this information to the CFSAC, to politicians, reporters, and scientists. Nothing ever happens. Maybe one of you reading this can find a way to do something about it.

      Bill Reeves’ name is on all of it – but he’s not the only one, and I ask every co-author, every collaborator, to disavow this research, and the resulting questionnaires.

      In the following documents, CDC describes a two-day hospital stay in Wichita. According to the CDC, there was only one such two-day hospital stay having to do with CFS. We are told there were 227 patients with CFS, 58 patients with CFS, 43 patients with CFS, and 6 patients with CFS – same hospital stay, same group of patients. What happened here?

      We are owed a public apology and a retraction, and we should not rest until we get one. This is important NOT because it was Reeves, but because CDC still uses a set of diagnostic questionnaires that Reeves claimed “operationalize the Fukuda definition” – but the only formal effort to verify that claim was in this two-day Wichita hospital stay.

      This MUST be aired publicly, because it is just plain WRONG, yet there remains an article claiming to disprove NMH’s relationship to CFS, the questionnaires continue to be used by CDC to diagnose CFS – AND co-authors continue to be decision-makers regarding our disease.

      Here goes:

      1. In April 2006 there was a conference call and press release about the genome study, where Reeves stated 227 patients with CFS from a population study brought into a hospital for two days were included in the data set – and also stated there was only ONE such study, so it’s the same as in items 2, 3, and 4.

      CDC’s official website has this link:

      http://www.cdc.gov/od/oc/media/transcripts/t060420.htm

      Couldn’t find the website using the URL given by CDC? Neither could I. I believe CDC has deleted it, which is a violation of Sunshine laws, but there’s always the Internet Wayback Machine :

      http://web.archive.org/web/20060512010531/http://www.cdc.gov/od/oc/media/transcripts/t060420.htm

      You have to scroll down to about the tenth paragraph of Reeves’ presentation to the reporters to find the assertion that 227 patients with CFS were put in the hospital for a two-day study.

      Just in case it looks like Reeves misspoke, there was also a written press release, also currently inaccessible (tho it LOOKS like there’s a link) – but again, that’s why we love caches and Google – in this one he says 227 patients with CFS in the second paragraph:

      http://www.cdc.gov/media/pressrel/r060420.htm

      Why was this open deception okay? Where’s the apology?

      2. In Dec 2005, BioMed Central published an article describing the 2-day Wichita hospital stay, in which it was stated that of 227 PEOPLE from the Wichita surveillance study were brought into the hospital for a two-day stay; 58 who had been diagnosed with CFS during the study, and 169 PEOPLE from 3 other categories: (1) “Insufficent Symptoms of Fatigue” (ISF) to be classified using the Fukuda definition; (2) CFS and ISF with major melancholic depression, which was exclusionary; and (3) a set of matched controls.

      So of the 227 PEOPLE who were brought into the hospital, only 58 had been diagnosed with CFS. And of those 58, only 6 remained after various exclusionary criteria were applied.

      To repeat, only SIX of those remaining in the study had been diagnosed with CFS using the methods of the surveillance study (telephone interview with physician follow-up, using the Fukuda criteria)

      http://www.cdc.gov/cfs/publications/casedef_10.htm

      Origional article:

      http://www.biomedcentral.com/1741-7015/3/19

      The information is mainly in the tables; if you are reading it on internet, click on table 2 and table 5.

      3. The same article found 43 patients currently afflicted with CFS using the new questionnaires – including only those 6 patients who had been previously diagnosed with CFS during the surveillance study, plus another 4 who were newly diagnosed, plus 6 who would previously been excluded for major melancholic depression for a total of 16 claimed to meet both the surveillance criteria and the new questionaires – Note: this is the ONLY published trial performed by CDC to substantiate their claims that the questionnaires “operationalize” the Fukuda definition:

      http://www.cdc.gov/cfs/publications/casedef_10.htm

      4. The depression exclusion was changed after a meeting of the so-called “CFS International Working Group” – BUT – the NEW criteria only said you could add in patients with major melancholic depression IF AND ONLY IF the bout of depression had resolved and not returned for at least five years before the onset of fatigue.

      You will not find the 5-year requirement in the abstract of the article on CDC’s website – you have to pull up the article in BioMed Central:

      http://www.biomedcentral.com/1472-6963/3/25

      “The 1994 case definition stated that any past or current diagnosis of major depressive disorder with psychotic or melancholic features, anorexia nervosa, or bulimia permanently excluded a subject from the classification of CFS. Because these illnesses may resolve with little or no likelihood of recurrence and only active disease or disease requiring prophylactic medication would contribute to confusion with evaluation of CFS symptoms, we now recommend that IF THESE CONDITIONS HAVE BEEN RESOLVED FOR MORE THAN 5 YEARS BEFORE THE ONSET OF THE CURRENT FATIGUING ILLNESS [my emphasis], they should not be considered exclusionary.”

      And, finally,

      5. The two-day hospital stay data was used in an article claiming to have disproved any connection between NMH and CFS (as described in a 1995 JAMA article by Hopkins researchers) – the article states that 58 patients with CFS were brought into the hospital for a two-day stay and were given tilt table tests, and did not have NMH/POTS. See

      http://www.cdc.gov/cfs/publications/causes_30

      But we know that only 6 of those 58 supposedly still had CFS by the time they entered the hospital for that two-day study. Even if they had turned to the questionnaires to put together the sample, it was only 43. So where were the supposed 58 patients with CFS in a two-day hospital stay??

      ———————-

      All of us are owed a formal retraction and repudiation of the publications resulting from the two-day Wichita hospital stay – and admission that those questionnaires CDC insists “operationalize” the Fukuda definition do nothing of the sort. They were NEVER validated. They need to be jettisoned.

      I tried for four years to do something about this, and I failed.

      I am now handing it to the community – and the co-authors, who share responsibility even if they worked on a different task in the study – to get something done. Public apology and public retraction – nothing less.

      Mary M. Schweitzer, Ph.D.

    22. bluebird says:

      Thankyou so much for staying with this developing story.

      We who suffer this painful and devastating physiological illness have been unnecessarily dealt a great mental and emotional trauma. And it was inflicted by Reeves himself, along with those he has misled for two decades.

      It is about time the CDC moved him out of our way. Maybe now we can find out what is killing us. Maybe now we can find out what has destroyed our careers, cost us our marriages, and left us unable to care for our children. Maybe now we can access appropriate treatment.

      I pray that no one ever again has to suffer the horror of being labeled mentally ill when literally dying of a viral illness. And what Reeves has done to this patient population is a horror.

      Again, thankyou for your interest.

    23. Myrtie Johnson says:

      No one in this string of comments has used the word “crooked” in connection with Bill Reeve’s research, but it was as crooked as the lung cancer research by tobacco companies. Yet this research is what doctors who want to practice evidence-based medicine depend on, leading many of them to have nothing but contempt for their patients.

      I hope your article will lead to change, to repudiation of Reeves’ multiple deceptions–his damaging studies, unsupported questionnaires, and unscientific definition.

      Myrtie J.

    24. oerganix says:

      Thank you both for this article. It is both rare and refreshing to find a factual article that doesn’t repeat all the slurs and misinformation that copycat “journalists” have put out there all these decades that I have been disabled by this illness. Reeve’s dedication to whomever he is dedicated (it’s not and has never been the sufferers of CFIDS) has stolen the lives of hundreds of thousands of Americans and negatively affected millions of others in countries around the world. In the process of betraying us, he has also destroyed the credibility of CDC and exposed it as the stagnant pond of polluted “science” it has become.

      My greatest concern now that he is gone is that all the junk “science” he and his collaborators put in place is still there. This includes, but is not limited to: a definition of the illness that includes patients who shouldn’t be included and excludes many who should; many “research” efforts that purport to show some kind of psychological reason for this illness, such as child sexual abuse and “emotional neglect”. Much of what is on the CDC website regarding this illness should be taken down, if not repudiated. It would also be of great service to medical practitioners and patients if the huge accumulation of real research on this illness could be referenced there. At the very least, a new campaign of health care provider education should be undertaken immediately.

      I would also appreciate it if you two would “keep an eye” on Dr Reeves in his new position. It sounds, to the eager ear of CFIDS sufferers, as if he has been kicked out but he may still have the ability to do great damage to us and others in his new position. He has already demonstrated a willingness to ignore real science and to spin all available evidence to conclude that the only treatment necessary for this organic illnesses is antidepressant drugs and talk therapy to change the way the ill think.

      Another suggestion for your further research: children get this illness and it is expressed somewhat differently from the adult version. Children are being taken from their parents, parents are being charged with child abuse or neglect because doctors and child advocates know little or nothing about this illness. Talk to Dr Dan Peterson, Dr Paul Cheney, Dr David Bell, Dr Nancy Klimas. They are treating patients with CFIDS and have decades of experience. They are very accessible.

      If you have time for only one video, here is a very good one by Dr Bell:
      http://vimeo.com/9143012
      http://vimeo.com/9254598
      http://vimeo.com/9261929
      It’s in three parts. One very important point he made is that patients with CFIDS are not really “fatigued”. He says that fatigue is something that healthy people experience as they recover from exercise. CFIDS sufferers do not recover from exertion in a normal way. Their bodies do not produce the proper energy in the first place and then do not detox the waste products of exertion in a healthy, normal way. He also makes a very good case for the probability that XMRV is causal.

      Again, thank you for some good journalism. It is still like an oasis in the desert of ignorance and misinformation.

    25. ST says:

      Where is the science in CFS?

    26. Arabella Williamson says:

      ST–read this:

      Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
      Vincent C. Lombardi, Francis W. Ruscetti, Jaydip Das Gupta, Max A. Pfost, Kathryn S. Hagen, Daniel L. Peterson, Sandra K. Ruscetti, Rachel K. Bagni, Cari Petrow-Sadowski, Bert Gold, Michael Dean, Robert H. Silverman, and Judy A. Mikovits
      (8 October 2009)
      Science [DOI: 10.1126/science.1179052]

    27. connie says:

      new director??? paging Dr Bell….paging Dr Bell….

    28. Quilp says:

      Thank you so much for giving those that cannot speak a voice. Did you know that here in the UK we have files relating to M.E. that have been classified by the UK Government, and cannot be accessed in our lifetimes ? Such documents are normally reserved as such on the basis of national security.

      Reeves himself has strong links to the Wessely school of psychiatrists here in the UK which promulgate the illness as being psychiatric. All that I ask of anyone is that you make up your own minds based on the evidence. The truth, I assure you, will soon follow.

      Thanks once again

    29. Erik Johnson says:

      Can anybody show me ONE “real” reason why “Fukuda 94″ was done, and how it “refined” the search for an underlying “unique clinical entity” in any way?

      No, that’s not what the Fukuda CFS definition was really intended to accomplish.
      By using new prototypes that were selected on the basis of the loose Holmes CFS criteria, Fukuda 94 became a tautological self-affirmation of what “CFS” is NOT.
      CFS was NO LONGER the illness of the actual people who caused the CREATION of the syndrome.
      Fukuda tried to put a separation between CFS and the evidence responsible for its creation.
      This was necesary for CFS to “officially” become nothing more than its own description.
      Reeves and the CDC thought that nobody would remember why CFS came into being.

      But I remember!

      -Erik Johnson
      Incline Village CFS survivor

    30. Not CDC Fan says:

      It’s unfortunate that one person with undeserved influence can ruin the lives of so many.

      There are other examples of incompetence and bias at the CDC. Lyme disease is another illness where misinformation by the CDC has caused pain, suffering, and death.

    31. Khaly Castle says:

      Well done.

      This paragraph….
      “Starting Feb. 14, Reeves will be senior advisor for a new mental health surveillance program that will explore how various diseases and conditions affect mental health. Virologist and cancer researcher Dr. Elizabeth R. Unger becomes director of the Chronic Viral Diseases Branch (CVDB), which includes the CFS program, on an interim basis.”

      ….could pose us a whole new level of threat, in the face of the DSM5 activities.

      http://cfsuntied.com/blog1/2010/02/12/dsm5-ticket-back-to-reevesville/

    32. Phoebe Snowden says:

      Reeves has been very involved with psychiatrists in the UK. Here is a press release re: a 422-page report that is part of a complaint lodged against those same UK psychiatrists and their criminally inappropriate “treatment methods” for CFS:

      PRESS RELEASE: MEDICAL RESEARCH COUNCIL

      12th February 2010

      A formal complaint has been lodged by Professor Malcolm Hooper with the Rt. Hon The Lord Drayson, Minister of State with responsibility for the Medical Research Council (Science and Innovation) about the “PACE” Clinical Trial of behavioural modification interventions for people with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).

      PACE is the acronym for Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation, interventions that, according to one of the Principal Investigators, are without theoretical foundation.

      The MRC’s PACE Trial seemingly inhabits a unique and unenviable position in the history of medicine. It is believed to be the first and only clinical trial that patients and the charities that support them have tried to stop before a single patient could be recruited and is the only clinical trial that the Department for Work and Pensions (DWP) has ever funded.

      Since 1993, the giant US permanent health insurance company UNUMProvident has been advising the UK DWP about the most effective ways of curtailing sickness benefit payments. The PACE Trial is run by psychiatrists of the Wessely School, most of whom work for the medical and permanent health insurance industry, including UNUMProvident. These psychiatrists insist – in defiance of both the World Health Organisation and the significant biomedical evidence about the nature of it — that “CFS/ME” is a behavioural disorder, into which they have subsumed ME, a classified neurological disorder whose separate existence they deny. Their beliefs have been repudiated in writing by the World Health Organisation.

      In 1992, the Wessely School gave directions that in cases of ME/CFS, the first duty of the doctor is to avoid legitimisation of symptoms; in 1994, ME was described by Professor Simon Wessely as merely “a belief”; in 1996 recommendations were made that no investigations should be performed to confirm the diagnosis and in 1999 patients with ME/CFS were referred to as “the undeserving sick”.

      The complaint is supported by a 442 page Report which addresses areas of major concern about the PACE Trial.

      These include apparent coercion and exploitation of patients, flawed methodology, apparent lack of scientific rigour, apparent failure to adhere to the Declaration of Helsinki, the unusual personal financial interest of the Chief Investigator, the vested financial interests of the Principal Investigators and others involved with the trial and the underlying non-clinical purpose of the trial.

      The psychiatrists’ unproven beliefs and assumptions are presented as fact and trial therapists have been trained to provide participants with misinformation; therapists have also been trained to advise participants to ignore symptoms, a situation that may in some cases result in death.

      There are some extremely disquieting issues surrounding the MRC PACE Trial and documents obtained under the Freedom of Information Act allow the full story to be told for the first time.

      People with ME/CFS do not seek any special consideration; they simply wish to be treated equally to those who suffer from other classified neurological disorders. As shown in the Report that accompanies the complaint, the MRC PACE Trial clearly demonstrates that people with ME/CFS are not treated equally to those with other chronic neurological disorders.

      The Report can be accessed at http://www.meactionuk.org.uk/magical-medicine.pdf

      File Size 6Mb

      Adobe Acrobat format

      CONTACT: Professor Malcolm Hooper Tel. +44 191 528 5536

    33. Parallels at the CDC says:

      This is a parallel to a controversial top CDC Director, Howard Frumkin, who was also recently reassigned to be an assistant to a very small CDC Global Warming division. Dr. Frumkin had been questioned strongly about his department’s handling of the formaldehyde promblem in FEMA trailers. Most recently, he had been corresponding with The Center for School Mold Help (SMH) (www.schoolmoldhelp.org), which was attempting to get Dr. Frumkin to revise the CDC’s incorrect information about mold and dampness-related illnesses. Once again, CDC had tried to deny these illnesses for more than a decade, but research has proven that indoor dampness (water-damaged buildings) and mold are associated with numerous inflammation-based illnesses, including auto-immune and respiratory diseases like new cases of asthma and chronic fatigue. The CDC produced a poor summary of one important study by IOM and shortly afterward, Dr. Frumkin was reassigned to a much lower ranking position. The problem is that the CDC STILL has the poor information on their website, and we are left wondering if the new administrator, Dr. Thomas Frieden, will act swiftly to rectify this. I know if I was in charge and millions of people were being made ill, I would not drag my heels to identify causes of and descriptions of widespread illnesses – particularly preventable ones from environmental sources. Check your homes for hidden mold with an ERMI test if you have CF. It might just be the reason. More on that at http://www.schoolmoldhelp.org for educational info and http://www.biotoxins.info, where Dr. Ritchie Shoemaker of Maryland offers webinars and help. People with diseases that CDC refuses to recognize need to keep the pressure and spotlight on them. We don’t need propaganda, we need to recognize what the research says and address the problems!

    34. Pete Helfrich says:

      Please help me share the story of how I became deathly ill from being exposed to toxic mold while attending college in a low income appartment where I was an eight time Dean’s List student living in a slum complex. When I exposed the truth on my blog

      ( http://www.moldvideos.blogspot.com )

      my ex-slumlord (Rick Landry) slandered me out of safe housing (due to my disabilities caused by the mold, I was eligible for a free apartment) & now I am deathly ill & homeless in NY Please make my belated X-Mas prayer come true by exposing what happened to me.. I’ve lost my teeth, gums, health, & home; please help me expose the truth.
      Regards, Pete Helfrich

      585-469-0234

    35. Justin Reilly, esq. says:

      Thank you for this accurate, well reported story on the reassignment of the criminal disgrace William Reeves. Please keep up the good work. You are helping millions of disabled people abused by the CDC, NIH and UK NHS, NICE & MRC. This is the best reporting can get- bringing back the tradition of Woodward and Bernstein.

    36. katieann says:

      Thank you so much for this article. Please continue to monitor our situation. If you wish more information regarding the CDC’s past with respect (or the non-respect) to CFS, may I suggest reading Hillary Johnson’s CDC expose entitled “Osler’s Web”?

    37. Jesse says:

      @ Pete Helfrich

      Nobody believes you, Pete e.g., black mold poisoning, your car window, 8 times deans list??? remember that D minus you got in radio production at SUNY Oswego? Or the fact you mentioned on Ripoff report and used to tell me how you struggled to get that C minus average for basic math and you needed a tutor? Doesn’t sound like a deans list student to me. you refuse to work and act like the world owes you a living. unless that living is from mike dunn and its under the table.

      yeah, pete, enjoy your life in the desert. you finally got out of rochester like you wanted. good for you. the family is proud of you and hope you stay out there and never come back. gramma doesn’t want you on her property again after what the police found in your bedroom.

      PEOPLE, JUST DISREGARD PETE’S COMMENTS. HE’S ONE NOT TO BE TAKEN SERIOUSLY.

      God bless you, you will need it.

    38. Susan says:

      For information about chronic fatigue linked with indoor dampness, visit http://www.schoolmoldhelp.org and http://www.biotoxins.info. The World Health Organization just published (July 2009) a large document called WHO Guide to Indoor Air Quality: Dampness and Mould, which outlines the extensive damage to health caused by indoor dampness and mold, including perturbation of the immune system (ie. chronic fatigue is involved with many). CDC is just starting to be willing to turn the corner in identifying the environmental causes of CF and other mold-related illnesses.

    39. Erik Johnson says:

      “Chronic fatigue” is just that!: Prolonged or persistent tiredness.

      “Chronic Fatigue Syndrome” is an entirely different animal.
      The syndrome was developed in 1988 as a research tool for the purposes of figuring out what the heck happened to hundreds of people at North Lake Tahoe who failed to recover from a strange flu-like illness.
      The sensation involved was nothing like fatigue, but the CDC called it CFS anyway. In the early days, one could tell who really had the illness that was called “CFS” by the predictable reply: “It is NOT FATIGUE!”
      Anyone who experienced that strange paralytic sensation would SURELY go out of their way to make sure this is clearly understood.
      So there is a high probability that when someone is content to have their illness-sensation conceived as being some kind of fatigue, that they did not experience the illness that was called CFS.
      In this way, “CFS” is almost diagnostic for someone who does not have a fatigue-illness.
      Strange… but true!
      -Erik Johnson
      Incline Village survivor
      Participant: Holmes et al CFS definition study group.
      Chapt. 23 of Mold Warriors: “Mold at Ground Zero for CFS”
      and, Chapt. 17 of “Surviving Mold”
      The Novice Pilot, CFS and other Medical Mistakes

    40. katieann says:

      um… this happened in 2010, not 2011. It was a done deal last year.

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