HHS Refuses to Correct their Wrongful Branding​

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I wish to thank advocate Eileen Holderman for her contributions to this blog post.

The Department of Health and Human Services (HHS) refuses to use the name myalgic encephalomyelitis (ME) in spite of the fact that it is being used worldwide by ME experts, advocates and patients. Instead, HHS insists on using their demeaning moniker  – chronic fatigue syndrome (CFS). Their refusal to use the proper name for this disease ignited a long course of government malfeasance, corruption and marginalization of one million American men, women and children suffering from ME.

Naming and Classifying the Disease 

In the mid-1950’s, an epidemic broke out at the Royal Free Hospital in London. Following that epidemic, the name myalgic encephalomyelitis was first used by ME pioneer Dr. Melvin A. Ramsay (as suggested by Dr. Donald Acheson).

Since 1969, the World Health Organization (WHO) has classified myalgic encephalomyelitis under Neurology – ICD-10, G93.3.

However, in the 1980’s, following the Lake Tahoe, Nevada outbreak of ME, the U.S. Centers for Disease Control and Prevention (CDC) chose a different name for the disease. In their quest to minimize the seriousness and potential huge impact of the disease, CDC coined it with the trivializing name – chronic fatigue syndrome (CFS).

In 2015, The Institute of Medicine (IOM) was contracted by HHS to devise another government constructed name and criteria. IOM created a new demeaning name for the disease – systemic exertion intolerance disease (SEID), which has been rejected by the majority of experts, advocates, and patients. The name is misleading because it implies that patients are only ill when they exert themselves and are otherwise fine if they don’t – which of course is not true.

The Fiction of CFS

The name – chronic fatigue syndrome – along with the government criteria, are an HHS fictional construct.  In their attempt to disappear the serious neuroimmune disease ME, HHS deliberately chose the name chronic fatigue syndrome because it could be easily conflated with the common condition of chronic fatigue.  Their intention was to create a false impression that those with CFS were primarily contending with one symptom – fatigue – rather than a vast number of symptoms affecting multiple body systems.

The scientific and medical communities are responsible for naming and developing criteria for diseases – not governments. ME expert researchers and clinicians named the disease myalgic encephalomyelitis and developed accurate criteria for the disease (CCC, ICC). HHS should not hijack the private scientific and medical sector’s authority.

The Reality of ME 

Myalgic encephalomyelitis is a neuroimmune disease (with an infectious component and/or etiology) appearing in epidemic and sporadic forms. ME affects multiple systems of the body: neurological, immune, cardiovascular, endocrine and energy systems. The illness typically has an acute onset of a viral or bacterial infection or toxin or chemical exposure.

The symptoms of ME are numerous and include but are not limited to the following: post-exertional collapse, muscle and joint pain, enlarged lymph nodes, chills, low-grade fever, headaches, extreme fatigue and weakness, cognitive impairment (delayed processing, aphasia, short term memory loss, etc.), orthostatic intolerance, dizziness, sleep dysfunction, allergies, mold and chemical intolerance, frequent reactivated infections and co-infections. The symptoms of ME leave patients severely sick and disabled for decades and many die prematurely from complications of the disease. Currently, there is no cure for the illness.

About one million American men, women, and children suffer from ME and about 17 million worldwide. Most patients are disabled and cannot work and about 25% are bedbound and cannot care for themselves.  Studies show that the quality of life for patients with ME  is one of the poorest compared to other chronic diseases.

“In my experience, it [ME] is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”—Dr. Daniel Peterson

The Repercussions of a Harmful Name

The CDC manufactured name – chronic fatigue syndrome – and the CDC criteria  (see next blog post), have harmed patients worldwide and have resulted in the following:

  • Inadequate federal funding – For over 30 years, the National Institutes of Health (NIH) has refused to adequately fund meaningful biomedical studies for the disease. ME receives less federal funding than hay fever, and a mere 2% of other similarly burdened diseases, yet has an enormous cost to our nation’s economy. From the start, NIH and CDC plotted to eliminate the disease by focusing on ‘fatigue’ in the name as evidenced by the letter the late Dr. Straus of NIH wrote to Dr. Fukuda of CDC in which he stated: “ I predict that fatigue itself will remain the subject of considerable interest but the notion of a discrete form of fatiguing illness will evaporate….I consider this a desirable outcome.” (see letter part 1 and part 2  provided by advocate Craig Maupen)
  • Stagnant scientific advancement – The lack of NIH funding has stalled impactful scientific advancements.  Although over 5,000 scientific papers have been published on the disease, many were privately funded and most findings of biomedical abnormalities were dismissed or not replicated by HHS.  The health agencies’ use of the name chronic fatigue syndrome (and flawed criteria) ensures paltry funding and controversy, which are reasons some researchers will not study the disease.
  • Insufficient and erroneous medical education  –  HHS has spread misinformation about the disease on their websites and in their medical CMEs and materials. Despite advice from ME experts, advocates and members of the federally appointed Chronic Fatigue Syndrome Advisory Committee (CFSAC) to correct the inaccurate medical information, HHS refuses to do so.  They continue to use chronic fatigue syndrome and often publish materials that describe the common condition of chronic fatigue instead of the neuroimmune disease ME.
  • Lack of expert clinicians – Lack of medical education has resulted in a scarcity of clinicians. The majority of patients do not have access to an ME specialist and are left to deal with local doctors, many who are not knowledgeable about the disease – leaving patients without proper medical care. The stigma attached to the disease due to the name and the intentional confusing medical information from HHS, are reasons such few doctors go into this field.
  • Recommendations of harmful treatments – HHS’s erroneous medical information has led unknowing clinicians to recommend harmful treatments to their ME patients, such as prescribing unneeded antidepressants, graded exercise therapy (GET) and cognitive behavioral therapy (CBT). Many patients have been seriously harmed by these recommendations, some permanently. The use of the flawed name – chronic fatigue syndrome – and flawed criteria deliberately conflates patients with ME with some who do not have ME. Therefore, treatments which are harmful to ME patients which may help those without ME, get wrongly attributed as successful treatments for ME patients, due to the conflating of the patient pool.
  • No FDA-approved treatments – The U.S. Food and Drug Administration (FDA) denied approval of Ampligen (an immune modulator shown to be effective in the drug trial). FDA has no approved drugs for ME patients and their inactions are influenced by HHS’s description of the “condition” as primarily “fatigue.”
  • Psychiatric bias – The CDC’s pseudoscientific name (CFS) and criteria enable a psychiatric bias to proliferate about the disease.  Some in the psychiatry and psychology fields (Wessely, Chalder, Sharpe, White, etc.) and in other fields (Gill, Walitt, Saligan and the late Straus and Reeves, etc.) intentionally misclassify the disease as a psychosomatic condition – in spite of overwhelming scientific evidence that classifies the disease as biological.  It is lucrative for psychiatrists and psychologists, as well as opportunists from other fields, to hijack a disease with a trivial and unscientific name – especially when government health agencies give preference and award grants to studies with a psychiatric slant and because health insurance companies reward those willing to put a psychological spin on a disease that isn’t psychological.
  • Difficulty getting approved for disability insurance – The inaccurate name and medical information are co-factors why many ME patients have a grueling time, no matter how severely ill, getting approved for disability benefits. In fact, the U.S. Social Security Administration (SSA) frequently denies patients benefits during the initial application process, citing that “fatigue” doesn’t qualify them for disability. Additionally, the psychiatric bias connected to the name and criteria of CFS causes many patients to lose their ERISA based disability insurance after the two-year period because ERISA only covers psychiatric illnesses for two years – despite the fact that the illness is classified as biological.
  • Rejection of health insurance reimbursements – The trivial name gives health insurance companies ammunition to deny payments for important tests such as two-day CPET, NK cell function, and cytokine panel blood tests, among many others, as well as for efficacious treatments such as antivirals and immune modulators.
  • Stigmatization of patients – The media frequently propagates government propaganda and a psychiatric bias about the disease. Many (except for a minority of informed journalists) don’t report on the abundance of published scientific biomedical findings, but instead use faulty government information; some because they wrongly defer to the government health agencies as the ultimate authority rather than investigate; and some because they pander to the government health agencies to glean favor and receive preferential treatment for future articles. Editors routinely use chronic fatigue syndrome instead of myalgic encephalomyelitis – and worse – often drop the word ‘syndrome’ from the headline of the article – downgrading the disease of ME to a condition of chronic fatigue. The unscientific name gives the media dispensation to write unscientific articles.
  • Marginalization of patients – Despite plenty of scientific evidence about ME, many family members and friends of patients often fall prey to the deception started by the government and promoted by the media. Patients are often subjected to comments such as: “I’m tired too, but I am able to push through it – why can’t you?”; “Go jogging – it will make you feel better!”  Because the name chronic fatigue syndrome obsessively focuses on one of a vast number of symptoms a patient suffers from – patients are wrongly labeled lazy, sleepy or merely tired.

HHS Must Rectify their Indefensible Nomenclature

For three decades, HHS has harmed ME patients by using their degrading name – chronic fatigue syndrome – for the disease – causing the following damaging results: paltry federal funding, choking consequential medical advances, erroneous medical education, a scarcity of expert researchers and clinicians, recommendations of harmful treatments, no FDA-approved drugs, proliferation of psychiatric bias, obstacles getting approval for disability insurance and health insurance reimbursements, and stigmatization of patients by the media, the public, family and friends.

And for three decades, ME advocates, patients, caregivers and experts have called for HHS to stop their harmful practices and use the name myalgic encephalomyelitis exclusively and resolutely!*

*Look for the upcoming blog post about ME criteria that will address how to eradicate the name chronic fatigue syndrome and retire the CDC and IOM criteria.

 

 

 

 

 

 

12 thoughts on “HHS Refuses to Correct their Wrongful Branding​

  1. Excellent article! Thank you! Calling ME by its proper, established name myalgic encephalomyelitis should be the first priority for everyone. Allowing ME to be called CFS or ME/CFS opens the door to all kinds of bait-and-switch shenanigans by those who wish to deny appropriate recognition, support, and medical treatment to people with ME.

    A distinct disease should have a single name and should not be blended with a vague fatigue syndrome to appease the powerful, but disingenuous, CDC. HHS supports confusing, ambiguous terminology because is creates doubt about the validity of the disease. This lack of credibility allows HHS to neglect and marginalize the disease, and deny appropriate research funding.

    It makes no sense to advocate for more research funding until it is clear that it is the neurological disease ME that is to be studied rather than the symptom of chronic fatigue, or some ambiguous, mixed condition that varies from study to study.

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  2. It is refreshing to read a blog about ME that cuts through the fluff and gets straight to some of the core issues which continue to plague pwME.

    Thank you for taking the time to offer a cogent synopsis of the mishandling of a disabling disease by the very government agency responsible for patient safety. I am reminded of FEMA and Katrina – only it appears pwME have been set adrift to fend for themselves for over three decades.

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  3. I agree with all you say, but understand that “CFS” did NOT originally replace ME. It replaced “chronic Epstein-Barr Virus.”

    The earliest evidence we have of this disease (and NOT “neurasthenia,” which is ridiculous), is the epidemic of “atypical polio” at L.A. County Hospital in 1934. Outbreaks of a similar nature occurred at least once a year internationally after that – assuredly there were more, but the diagnosis was mixed.

    In the 1950s, when “atypical polio” became outdated because, supposedly, polio had been “conquered” by the vaccine, Melvin Ramsay and others came up with the name “Myalgic Encephalomyelitis” as a substitute. That was adopted by WHO in 1969, as a neurological disorder. All the British Commonwealth Nations adopted the name M.E.

    BUT – not the US. The US did rename the disease after the mid-1950s, and for the same reason. But they named it “epidemic neuromyesthenia.” THIS IS IMPORTANT TO KNOW. The diagnosis M.E. was NEVER used in the US. And epidemic neuromyesthenia had been buried by the 1980s. So when the cluster outbreaks occurred in the mid-1980s that would eventually be named “CFS”, neither option was available – M.E. or epidemic neuromyesthenia.

    Back to EBV. The natural home for that disease at NIH was NIAID, the National Institute for Allergies and Infectious Disease (which had performed poorly during the AIDS crisis). Stephen Straus, the nation’s “expert” on EBV at NIH, decided by 1986 that The Disease was not “caused” by EBV (mono, glandular fever) – and that it was psychiatric in nature. He began calling it “the chronic fatigue syndrome” in funding requests (thanks to Pat Fero for this info). And Straus was impressed by his own importance – he was interviewed in the popular press all over the place.

    When a meeting was held by CDC and NIH (joint chairs were Ian Holmes of CDC and Straus from NIH – both had control of government funding and most researchers didn’t want to cross them) to name the numerous outbreaks of disease occurring around the nation – not just Incline Village; indeed, Incline Village wasn’t even the first – but it WAS a phenomenon of the mid-1980s – there WERE at least four researchers present who knew about M.E., and said that is what this disease outbreak was. But they were voted down. As a result, they walked out of the meeting.

    The article that ensued DOES NOT EVEN MENTION the option that this disease was M.E. (As a scholar, I find that unprofessional.)

    The point here is this is why it is so hard to get the name and concept M.E. used in the US – because it never WAS used in the US. But we are trying nevertheless.

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  4. I think that ME advocates need to start reframing the discussion. Arguing about the use of terminology is getting ahead of what the real problem is. By speaking simply about a name we are tacitly showing that we believe that CFS and ME are the same thing. I think that we all need to take a hard look at the creation of CFS and realize that it, by no means, was intended as a response to an ME outbreak in Nevada. The official response from the CDC (Holmes 1987) is that there was no outbreak in Nevada. How then could their paper a year later be a response to something that they believed didn’t exist? Every patient and advocate needs to re-read Holmes 1988. There is no mention of Nevada, there is no mention of ME, there is no mention of outbreaks. CFS was an unscientific renaming of a syndrome that has so far never been scientifically confirmed to have existed at all, that is chronic epstein barr virus syndrome.

    I feel that people who are truly advocating for ME need to first start by rejecting the concept of CFS outright. We must reject the criteria as unscientific, including Fukuda, Oxford, and Holmes. We must reject all research using these criteria as unscientific. None of it can be made to apply to ME after the fact. We must make it clear that we are not simply trying to rename CFS to ME. We need to reject CFS outright and insist that ME finally achieve the recognize it deserves, as a distinct nosological entity, instead of allowing it to remain hidden under the umbrella of CFS.

    This is a much more powerful approach than simple bickering about our taste in names because it has never actually been about the name. What it’s really about is a huge confusion, several different groups of people using the same name to talk about completely different things; the CDC using the name to describe chronic epstein barr virus syndrome, the British stealing the name to describe persistent psychiatric fatigue, and patients largely using it to describe ME because they didn’t know the disease they had already had a proper name and criteria. How can real science ever be done on such a thing? It’s time for fatigue based research to stop. We must reject Fukuda/Holmes/Oxford/SEID/CCC based research and call for research on true, strictly defined Ramsay/ICC ME.

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    • Thank you for your good comments, Weynard. Please see the asterisk at the end of the blog which refers to the upcoming blog on criteria which will tackle the issues you brought up of eradicating CFS and its criteria and promoting the sole use of the criteria created by ME experts. It will clarify the steps to be taken to achieve this and to correct the mess that the government made.

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  5. I have studied the IOM report carefully, and regret that we are not using it as the weapon it could be for us. Remember, the context was that the Committee appointees, deliberately missing most of the ME experts, were clearly intended to rubber-stamp the prevailing Wessely model of the lllness. In the teeth of this, the Committee came out clearly stating that this was a disease, not a psychiatric disorder. Their first recommendation was to get rid of the title Chronic Fatigue Syndrome. They emphasised the fact that patients suffered severe levels of illness and disability. They prefaced their recommendation for the title ‘Systemic Exertion Intolerance Disease’ with the statement that it was intended to emphasise the fact that ‘exertion, of any type, physical, cognitive or emotional, may adversely affect many organ systems’, and have serious consequences for the patients in their lives.

    The Wessely model is that we have the false belief that we have a serious physical illness, in which exercise makes us worse. The IOM report states unequivocally that we have a serious physical disease in which the central feature is that exertion does make us worse. Can we not recognise that the IOM completely undermines the psychiatric model and therefore the treatments they recommend, CBT and GET?

    The report continues to propose that SEID be placed in its own ICD classification, ‘not related to CFs or neurasthenia’. Presumably as a multi-system medical disease, such as lupus, or myasthenia gravis

    I don’t understand why we aren’t hammering home the message of the IOM report. I certainly do understand why the psychiatrists are having a fit about it, Edward Shorter, a major supporter of the psychosocial model describes it as a disgraceful sell-out to the patients’ voice. They know which side their bread is buttered on, and can see that the IOM report completely undermines their position.

    Why don’t we patients understand that as well? The most direct and serious threat to our wellbeing is the medical abuse patients suffer under the psychiatric model…how many of the severely ill only became so after a programme of GET?

    I get that we need the ICD classification as a disease, not a psychiatric disorder. But do you realise how many neurologists will categorise ME and FM as a ‘functional neurological’ problem, and ship their patients off to the psychiatrists? Jon Stone, for example, (who gives talks about ‘MUS’…’medically unexplained symptoms’ which apparently turns into a psychiatric condition) He calls ME/CFS a ‘functional disorder’, and he has great regard for Michael Sharpe. Throwing ME patients to the neurologists isn’t necessarily going to provide them with respect, or protect them from the psychiatric model. (Nor is sending them to a pain clinic…they also are pervaded with the psychosocial model.)

    We aren’t going to get it, but wouldn’t we be better off with a diagnosis recognising a ‘disease’ in which exertion causes multisystem damage?

    Ramsay’s name for the disease is important, but what is even more important is recognition of the importance of his (and Acheson’s) treatment recommendation for complete rest from the inception…why arent we fighting for that?

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    • While the IOM report itself may be useful as a political tool, I don’t believe it’s the platform we should be moving forward on. SEID is another in a long line of unscientific concepts created by a committee. They tossed ME and CFS in a blender and SEID is what they poured out. No science was performed in an attempt to validate the criteria. Not all ME patients will fit the SEID criteria due to the fatigue requirement, and not all CFS patients will fit the SEID criteria due to the PEM requirement. Is it really OK to throw these two groups under the bus in the name of progress? I don’t believe so.

      While the report turned out much better than it could have (take a look at the latest IOM report on GWI to see what could have been if advocates hadn’t fought so hard) it was still largely a waste of money. We did not need a new name or ICD code for ME, nor did we need new criteria for it. The IOM’s effort did not fix any of the pressing issues and in fact only made things worse.

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    • “They know which side their bread is buttered on,”

      Now we are getting closer to the heart of the matter. The question we need to focus on is, exactly *who* is buttering the bread? Until those persons and organizations are identified and pressured (or prosecuted, which would be my preference) the deliberate policy of non-research will not change.

      I hear lots of people use the phrase “Speak truth to power”. Well, the powerful already know the truth, and they are laughing all the way to the bank while patients and advocates run around in circles and fuss over different labels and criteria (there are now more than *twenty*) and other distractions.

      I have a hard time understanding why people refuse to seriously look at the obvious conflicts of interest, corruption, and fraud surrounding this disease. Government officials have lied to me, about nearly everything, for my entire life. Society is saturated in lies, fraud and corruption. Within the past month an FDA commissioner was forced to resign due to allegations of corruption. Everyone is aware of billion-dollar fines routinely paid by drug companies, who are then allowed to move on to the next scheme. And still we don’t want to face the fact that disability insurers have saved billions and billions in benefits payouts because “CFS” is classified as a “mental illness”, with benefits limited to two years.

      Was Straus connected to the insurance industry? We don’t know. How about Fauci? He is responsible for kicking the research program out of his institute:

      “Dr. Anthony Fauci, NIAID Director, met with the Dr. Harold Varmus, Director of NIH, and concluded that CFS was more complex and activities should be relocated from a single NIH institute.” (CFSAC minutes Sept 2003)

      “Everyone” (except insurers) agrees we have a serious devastating illness, including Obama, NIH Director Collins, various Congresscritters, world-famous researchers, etc, etc. And *still* the policy of non-research does not change.

      So once again I ask, exactly *who* is buttering the bread?

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      • The connection between the late Steve Straus and American insurance companies runs through the British psychiatrists of the “biopsychosocial” school who were used as advisors to CDC, NIH, and the Dept. of Defense in the US.

        Straus’s 1988 article suddenly connecting CFS to ME (or epidemic neuromyesthenia), atypical polio – and mass hysteria – used many of the same sources Simon Wessely had been using or would soon employ. Why would Straus suddenly care about the McEvedy and Beard articles from 1970,71 claiming that ME outbreaks from the 1950s were just episodes of mass hysteria, if there was nothing to connect ME with CEBV, which was technically the disease renamed CFS? Where on earth did he hear about “American Nervousness” (1869), the book used by Wessely to claim ME and “CFS” were actually modern cases of neurasthenia?

        If you go back and look at the Holmes article (1988), despite ME having been brought up in the meeting, the article itself contains NO mention of either ME or epidemic neuromyesthenia (the name chosen in the US when the UK and Commonwealth nations adopted ME), or atypical polio, or Icelandic Disease, etc. So how were the two connected?

        I don’t know – but they were. It has been suggested that Wessely was on the Board of Directors of UNUM-UK. I would really love to have citable evidence of that. British advisors were not required to fill out Conflicts of Interest forms like American advisors, so there were none to find out about – until Peter White had to ‘fess up to being Chief Medical Officer of Scottish-Provident and also connected to Swiss-RE, a multinational re-insurance company.

        White actually broke US federal law by NOT declaring his connections with Scottish-Provident and Swiss RE on the conflict-of-interest form he filed with the US government when he chaired a committee at CDC that evaluated the CFS program for the incoming Obama administration in 2009 – he stated he wasn’t being PAID to be chair of the committee, so therefore he had no conflicts of interest. But that’s not what the law says – and it’s actually a federal felony. [No, the US government has no interest in this information. But it’s there.]

        I don’t know where Fauci fits into all this, except that he extolled the virtues of this rather horrible man (Straus) all the time. But there’s your connection to the insurance companies. (Aside from the continuing travesty of the insurance companies being permitted to run workshops for medical licensing credit …)

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  6. Thank you for this excellent post, Gabby! It’s an important reminder that fighting for the accurate name is anything but being pedantic about semantics. The harm done by the terms “CFS” and “ME/CFS” is very real and only paralleled by damage caused by the faulty disease definitions created by HHS and HHS-sponsored committees.

    I am glad to see that you are addressing accurate criteria and the correct name, the two most important issues for our community, in your first two blog posts. As Jerrold points out, it does us no good, and, in fact, has great potential to harm us more, to receive funding for the study of the combination of the disease, ME, and the hodgepodge, CFS, which is a placeholder for various yet-undiagnosed fatiguing illnesses or idiopathic fatigue Therefore, like you, I am concerned about replacing the term “ME/CFS” with the term “ME” without limiting its use to the disease, myalgic encephalomyelitis. If such rebranding sticks, then myalgic encephalomyelitis, will have successfully been disappeared for good.

    I look forward to your next post discussing the importance of the use of the proper definition.

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