My thanks to advocate Eileen Holderman for her consultation on this blog post
Fake Media Attacks on #PwME
In the past week, there has been a media onslaught of biased and stinging articles maligning 17 million disabled men, women and children worldwide who suffer from the acquired neurological and immunological disease myalgic encephalomyelitis (ME). The false media stories about the disease betray the ample scientific evidence that this is an acquired, infectious, biologically based disease which appears in the outbreak (50+ worldwide) and a sporadic form.
For decades the biopsychosocial (BPS) UK force, led and assisted by the US Centers for Disease and Control (CDC) hijacked a biological disease and falsely depicted it with their false BPS indoctrination. The seeds were planted decades ago by CDC, and BPS proponents worldwide jumped on the bandwagon. Powerful forces whether in the insurance industry or government health agencies have a financial stake in making this disease disappear. With their science denialism, they are saving massive amounts of money by withholding medical testing, treatments, research and disability payments.
In 2011, the costly UK PACE Trial recommending GET and CBT as treatments for “CFS” was published. It was met by severe criticism from the medical, scientific, advocacy and patient communities for the poor use of cohort selection (Oxford Criteria), faulty study design, changing protocol midway – including criteria and outcome measures. Recently, the UK BPS propagandists’ trophy, the PACE Trial, has been experiencing a blitz of increased criticism from scientists, academics, and advocates – discrediting the study for its poor design and unreliable findings. To save embarrassment for their failed study, UK BPS promoters are instead deviously accusing the victims (17 million severely disabled people) with the crime of daring to complain about being forced to take harmful bogus treatments – treatments which ME experts agree in consensus are harmful to people with ME.
In the Reuters’ article Special Report: Online activists are silencing us, scientists say, the author writes a one-sided, distorted piece which not only tells the BPS slant but attempts to legitimatize the false narrative that ME is just an ailment of the mind. The facts, that over 10,000 scientific papers have been published showing biological abnormalities and that nearly 100 ME clinicians, researchers, and academics signed a letter in opposition of the PACE trial and its findings, were purposefully left out of the piece.
And of course, just like earthworms who mysteriously appear after an intense rain, other media outlets published articles this week with the same insulting and shameful propaganda. I’m not surprised by this. It’s the BPS proponents’ last major lost battle cry!
Victim blaming and falsely defaming a group of advocates are classical silencing methods which I wrote extensively about in my blog: “Resisting Attempts to Silence #PwME.” This well-known manipulation method is reprehensible but, when directed at a vulnerable, very ill patient community, it is particularly cruel and shameful.
Reuters Quotes CDC’s Dr. Unger
The Reuters piece quotes CDC’s Dr. Elizabeth Unger who reveals CDC’s true colors when it comes to GET and CBT. The article states:
The head of the CDC’s chronic viral diseases branch, Elizabeth Unger, told Reuters this [the removal of GET & CBT terms] was done to remove jargon and medical terms that are not widely understood by the public. “We received feedback that the terms were confusing and too frequently misinterpreted,” she said in an email response to questions.
Unger said the CDC’s advice stresses that each CFS/ME patient’s needs are different. “For some, carefully managing exercise and activities can be helpful,” she said. “Likewise, some patients may find that talking with a therapist helps them.”
Dr. Unger could have used this opportunity to condemn GET and CBT as harmful to patients with ME but, chose not to. Instead, Unger claims that CDC removed the labels of these therapies because it was “confusing” and frequently “misinterpreted”!
What she goes on to recommend sure sounds like CBT and GET!
The organization MEadvocacy.org and independent ME advocates have been strong proponents in pointing out that CDC’s claims of an improved website are not that at all. They just removed some trigger labels yet, the message is the same old (see my blog – Emperor CDC’s New Clothes).
CDC’s Ongoing Malfeasance
In the US, for over three decades the CDC with intent and malice took measures to bury the disease ME. They did this by controlling the narrative of the disease. They consistently refuse to acknowledge that this is an infectious disease which appears in outbreaks and refuses to adopt the criteria created by international ME experts – the International Consensus Criteria (ICC). Instead, they repeatedly re-define the disease with overly broad meaningless definitions.
CDC’s leadership decided from the start that they were going to bury the distinct disease ME. Their malfeasance was revealed through an FOIA request by advocate Craig Maupin. Craig obtained a copy of a letter written by Stephen Straus (NIAID) to Keiji Fukuda (CDC) after he authored the 1994 Fukuda criteria.
Now that the definition is revised we could project at leisure what will come of it. I’d be very interested in your frank opinion on the matter when convenient. My own sense is that a few years of use in the field will once again verify that there is no demonstrable or reproducible differences between individuals who meet the full CFS criteria and those who can be said to suffer Idiopathic Chronic Fatigue. This would beg the question of whether additional revisions to the definition are warranted, or its entire abandonment.
I’ve felt for some time, Kieji, that those that have CFS are at a certain point along a continuum of illness in which fatigue is either the most dominant symptom or the most clearly articulated by virtue of impression on the part of the patient or physician that such a complaint is important. I predict that fatigue itself will remain the subject of considerable interest but the notion of a discrete form of fatiguing illness will evaporate. We would then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome.
The desired outcome – the evaporation of the disease!
Timeline of CDC’s Burial of ME Through the Creation of Inappropriate Names and Overly Broad Definitions
In 1988 – CDC created the Holmes Criteria. The CDC’s definition emphasized “fatigue” and required 8 out of 11 symptoms for diagnosis with no explicit exclusion for all [edited to add “all” 3/22/19] psychiatric conditions. This is also when the demeaning moniker “chronic fatigue syndrome” was stamped on us, creating the false narrative that people with ME are just lazy and choose to complain about a common complaint of fatigue.
In 1994 – CDC redefined the disease using the Fukuda Criteria. This time, CDC engaged the aid of BPS proponents – Michael Sharpe, Simon Wessely, Andrew Lloyd, and Ian Hickie in writing this watered down definition. The new definition reduced the number of symptoms required for diagnosis to only 4 out of 8. The stress was still on fatigue, and the hallmark symptom post-exertional malaise (PEM) was not required (only optional).
In 2005 – CDC created the Reeves Criteria (also called the Empirical definition). The authors, William Reeves, Elizabeth Unger, and Suzanne Vernon also promoted the Reeves’ self-reported questionnaires which were all about subjective feelings of fatigue. This latest definition was so broad (basically if you had long term fatigue, you received a diagnosis of “CFS”) that it substantially (and falsely) increased the prevalence of the disease.
CDC’s Ongoing BPS Propaganda with the Creation of the Toolkit
On November 3, 2006, the CDC launched its toolkit for health care professionals at the National Press Club Conference. The toolkit, which Kim McCleary of the CFIDS Association of America (now called Solve ME/CFS Initiative) helped write, features and details recommendations for graded exercise therapy (GET) and cognitive behavior therapy.
Dr. Anthony Komaroff who spoke at the conference stated: “But the good news is that there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which was waged for 20 years, should now be over.” (This – nine years before the IOM Report was published)
Yet, perversely, almost the entire CDC toolkit is about psychological treatments for “CFS” such as GET and CBT. It talks about coping methods and emotional issues. CDC’s toolkit for clinicians was featured on the CDC’s ME/CFS website as well as tens of thousands of hard copies that were sent out to medical practitioners nationwide. It was also translated and disseminated into Spanish.
CDC has tentacles all over the world and after the media presentation, the CDC toolkit started to appear on medical websites all over the world causing clinicians in different countries to spread the abuse. Additionally, CDC’s toolkit linked to London’s St. Bart’s Hospital where Psychiatry professor Peter White worked and propagated the BPS misinformation.
To this date, CDC has not officially retracted the toolkit nor have they issued a black-box warning against using GET and CBT for pwME.
CDC’s Latest Attempt at Entombing ME with the IOM Criteria and SEID Name
Against the urging of the medical, research, advocate and patient communities, CDC contracted – for a million dollars – with the Institute of Medicine (IOM) (now called National Academy of Medicine (NAM)) to redefine the disease yet again. This was in direct violation of the recommendation of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), doctors, researchers, ME advocates, and patients. ME clinicians, researchers, and advocates wrote open letters (experts’ open letter and advocates open letter) to HHS urging them to cancel the IOM contract and instead adopt our ME experts criteria (the Canadian Consensus Criteria (CCC) with the aim of working toward the adoption of the International Consensus Criteria (ICC)).
CDC refused to adopt and use our experts’ criteria because it would mean relinquishing their hold on the puppets spewing the false BPS narrative of the disease and admitting to the actual reality of the biological disease ME.
In 2015, the IOM authors delivered their report. They complied with CDC’s wishes and created another overly broad definition with a small checklist of 4 out of 5 common subjective symptoms. The IOM authors did not specify any specific testing to aid in diagnosis (the ICC does) and, most importantly, no psychiatric exclusions are required. This will result in many people, some with psychiatric disorders, to be misdiagnosed and muddy the waters. Not only did the IOM authors deliver, per CDC’s directive, a loose meaningless definition but, they also recommended a new absurd name – systemic exertion intolerance disease (SEID).
MEadvocacy.org and ME advocates have repeatedly informed the community about CDC’s ongoing malfeasance and how this will continue to adversely affect people with ME worldwide. Since the 1980’s CDC’s stronghold and perversion of the narrative of the disease have driven the lack of large scale serious biological studies, proper medical care, appropriate medical testing, and promising FDA approved treatments. They used methods to accomplish their aim of burying ME by redefining the disease over and over again and really blurring the line whether this is a biological or psychosomatic disease. CDC engaged the aid of UK BPS proponents to help carry out their harmful recommendations, and they continue on this contemptible path.
The media outlets have jumped on all this misinformation and have caused untold harm to people with ME by misrepresenting the disease and by mischaracterizing pwME as lazy malingerers.
CDC remains the puppeteer – still pulling the BPS strings worldwide!