Beware of Articles About ME That Conceal Support for GET/CBT

Truth lies

Please note – the name chronic fatigue syndrome (CFS) is used on this blog only because that was the name used in the article it refers to.  I and other ME advocates promote the use of the proper name myalgic encephalomyelitis (ME) for this complex neuro immune disease.

I have seen articles and blogs widely shared and recommended by patient advocates and organizations which appear on the surface to be factual and affirmative yet, on close inspection contain misinformation about myalgic encephalomyelitis (ME) and even include recommendations for harmful treatments such as graded exercise therapy (GET) and cognitive behavioral therapy (CBT).

One such example is the September 2017 article in PTinMotion – “The Real Story About Chronic Fatigue Syndrome” by Eric Ries.  Ries tells the story of Nicole Rabanal, a ‘chronic fatigue syndrome’ (CFS) patient, who is also a physical therapist (pt).  Rabanal was a previous skeptic of CFS which she believed to be a catch all term used when medical practitioners did not know what is wrong with a patient. But, when she, herself, became sick in 2014 – suddenly feeling like she was “hit by a truck” and eventually receiving an official diagnosis of CFS – she becomes a believer and understands that this is a real organic disease.

Rabanal, having worked as a physical therapist for 25 years uses her pt skills to treat herself and then other CFS patients as well.  She demonstrates the importance of listening and understanding the signs of when one is pushing beyond their limit and recommends appropriate exercise and stretching routines to avoid harmful effects.

Rabanal explains that due to her disease she can only work two hours at a time with modifications,  “I sit a lot, and lean or move to help manage my orthostatic intolerance—which does not allow me to stand still, unsupported, for more than 5 minutes.”  These physical adaptations and pacing is a lesson for every patient dealing with this disease because overdoing it has damaging, at times permanent, consequences.

But, Rabanal continues with damaging advice to other physical therapists. Her message about recognizing and assigning patients a CFS label using a simple list of symptoms taken from the IOM criteria has dire consequences.  She doesn’t recommend that PTs send patients who they suspect of suffering from the disease to a specialist for a full work-up with tests to exclude possible differential diagnoses, to enable a proper diagnosis.

This has been one of the many reasons why so many in the ME community are opposed to the use of the IOM diagnostic criteria.  HHS charged an IOM panel to create yet another government sponsored definition of the disease with a simple checklist of a few symptoms and no exclusions. This will cause a major overdiagnosis and will further murky the waters of what this disease truly is.  That is why ME advocates and ME organizations prefer and recommend the International Consensus Criteria (ICC) which were created by ME experts for diagnostic and research purposes.

The piece continues its decline when the author contacts other PTs and quotes their views about CFS and how PT’s should treat them.  Although the report warns of PACE’s pitfalls recommending GET and cognitive behavior therapy (CBT), it goes on to recommend both of these (first in hidden than in overt forms).

  • .. “the last piece is to get patients into longer-duration activities by way of gradually building on anaerobic training—while recognizing that the prognosis for full functional recovery is very guarded and limited.”
  •  “When an individual gets that super-malaise from exertion, that can foster kinesiophobia, or fear of movement,” .. “If you can empower the patient to find movements that don’t trigger that, while correlating to patient-identified problems and impairments that you’ve noted, your therapeutic alliance with that patient improves, along with the prognosis“.

The article goes on to portray CFS patients as ‘depressed’ and ’emotionally charged’ (these are common code words used by psych lobby in an attempt to highjack organic disease)

  •  “Ninety percent of our patients with chronic fatigue syndrome start crying during this process (the interview), simply because we’re spending time with them, taking them seriously, and demonstrating that we care about them as human beings.
  • You almost need to be part psychologist, to ensure that they get the most out of their treatment sessions.”
  • “While her husband and kids were eating dinner, she was crying in bed by herself,”

The resource section at the bottom of the article reveals serious and damaging lies about the disease, including strong endorsements for harmful treatments that may cause permanent damage as well as death to ME patients!

Physical Therapist’s Guide to Chronic Fatigue Syndrome This guide promotes exercise for CFS patients.  There are no proper scientific studies proving that exercise is beneficial to ME patients.  Moreover, science, as well as patient testimonies, have shown exercise to be harmful to patients suffering from ME

Mayo Clinic – on CFS – This site is full of outdated information and still features the faulty CDC Fukuda Criteria.  For treatments, they recommend antidepressants, GET and CBT!

“Exercise As Treatment for Patients with Chronic Fatigue Syndrome”

This is a Cochrane review with the following author’s conclusion:
“Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes. A positive effect with respect to sleep, physical function and self-perceived general health has been observed, but no conclusions for the outcomes of pain, quality of life, anxiety, depression, drop-out rate and health service resources were possible. The effectiveness of exercise therapy seems greater than that of pacing but similar to that of CBT. Randomised trials with low risk of bias are needed to investigate the type, duration and intensity of the most beneficial exercise intervention.”

There are so many articles, blogs, and papers which spread inaccuracies and misconceptions of the disease.  They have caused great harm to ME patients and have given fodder to those who want to spread the lies that this is an imaginary syndrome trumped up by emotionally charged women.  As advocates, we need to weed out those that will perpetuate this harm and only promote those that are factual.

 

Eileen Holderman, CFSAC Comment – January 13, 2017

Good morning to the Committee Members and to the stakeholders.

I’m Eileen Holderman, an advocate for ME, GWI, and other neuroimmune diseases.

I formally served as the Patient Advocate on CFSAC and chaired 2 subcommittees – one was for the review and improvement of the CDC Web Site.

While I believe advocates’ efforts should always be ongoing to improve Government policies, I am dismayed when I see efforts that are redundant and seemingly futile. Specifically, I am referring to the efforts advocates are asked to make in regard to the TDW for the improvement of the CDC Web Site, not only because of my subcommittee’s work for 4 years, but because of the efforts of all my predecessors.

Today, I will read into the public record excerpts from an open letter I wrote to Dr. Beth Unger of CDC, at the time I completed my 4 year term on CFSAC.

Here are excerpts, which unfortunately, still apply today:

Dear Dr. Unger:

As I prepared to write my thank you letter, I checked out the CDC Web Site so my final remarks would be accurate. To my surprise and dismay, I noticed CDC created a new web page to feature May 12 Awareness Day. I say ‘surprise’ because there was no mention of it to me or my Review Panel; and there was an opportunity to mention it as recent as last Friday during my Subcommittee Teleconference when I asked if there were any announcements from HHS – you will recall that my inquiry was met with an awkward silence. Had CDC communicated to me that they planned to feature May 12 Awareness Day with the erroneous content of the CDC Web Site, I would have objected. Furthermore, our national and international ME/CFS and FMS organizations do an exceptional job of raising awareness for these diseases so CDC need not undermine those efforts. I appeal to CDC to remove the new web page as advocates have already begun to voice their justified criticisms of the content.

For the past 4 years, my Review Panel and I have made countless suggestions to improve the CDC Web Site. While CDC did make changes to the general sections of the web site, my opinion is that most of the changes were cosmetic, not substantive. The CDC Web Site still resembles a web site for the condition of chronic fatigue instead of a web site for the neuroimmune disease of Myalgic Encephalomyelitis (aka CFS).

Below, are my specific (though not my complete list of) recommendations to improve the CDC Web Site that need to be, but have yet to be, implemented:

* remove the Resource Guide

* remove the Toolkit

* remove the expired and needless Emergency Preparedness Webinar

* remove the expired CDC/Medscape video online course

* remove all references to the Oxford Case Definition in the CME online courses

* remove references to CBT

* remove references to GET

* remove references to St. Bart’s and NICE Guidelines

* remove all links to CDC psychosocial published studies on ME/CFS

* remove all implications both subtle and overt to ME/CFS as a psychogenic and/or a fatigue “condition”

Hopefully, the CDC Web Site will get on board with our 50+ ME/CFS experts and adopt the CCC in their CME courses and in all of their content, and reference the 5000+ biomedical papers on ME/CFS, and offer links to the IACFS/ME Primer and the ME ICC Primer and a section on Pediatric ME/CFS. The CDC Web Site needs to reflect the serious, disabling nature of this neuroimmune disease affecting nearly one million American men, women, and children and 17 million worldwide.

Again, thank you for the time and consideration you, Ermias, and John have given me and the Review Panel in regard to improving the CDC Web Site.

Best regards,

Eileen Holderman                                                                                                                                                          

Thank you for the opportunity to speak today and I wish all of you well.

 

CFSAC Comment, Gabby Klein – January 13, 2017

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) met January 12 and 13, 2017. Here is the meeting agenda.  The following was my call-in testimony.

Hi, my name is Gabby Klein.  I am a patient advocate and blogger.  I have been ill with ME for 14 years.

As I sat down to write, I thought of our current situation as ME patients at the start of the year 2017. I thought about the comparison of the state of  ME patients today to a decade or three ago and became aware that there have been next to no improvements made throughout the years.  Due to HHS neglect and misdeeds, over 30 years after the Lake Tahoe outbreak:

  • Few doctors nationwide have the knowledge and experience necessary to properly diagnose and care for patients.
  • The same harmful GET and CBT therapies continue to be recommended by HHS.
  • There are no FDA-approved drugs.  
  • NIH still spends a minuscule amount of money on a disease with an enormous economic, mortality and quality of life burden.
  • The CDC and other HHS agencies continue to spread incorrect, harmful information on their website and in their continuing medical, educational material.
  • The unscientific and demeaning name, CFS, is still being used and the government still controls and fabricates incorrect and overly broad definitions – like the IOM.
  • HHS continues to cover up their negligence and malfeasance with the creation of more committees, workshops, and working groups – giving the false impression that they are actually doing something for the patients.
  • There is a continuing lack of transparency as well as a withholding of crucial information from the patient community.  The recent incident of NIH’s invitation – by Dr. Walitt with Dr. Nath’s approval, to ME denier Dr. Shorter to lecture on the false history of the disease, was a prime example.
  • False promises are frequent as in Dr. Collins promise of a considerable increase in funding for ME/CFS. It has in reality resulted in mere crumbs – an increase of $7 to 8 million for a million US disabled patients!  Moreover, in his eight years of service as NIH director, Dr. Collins has never mentioned ME/CFS when speaking to the Senate Appropriations Committee advising on specific increases in NIH funding.

Until HHS publically apologizes to the ME community for their three decades of neglect and malfeasance and until the time when HHS

  • exclusively uses our expert criteria – such as the CCC, ICC, or Ramsay’s
  • uses the correct name myalgic encephalomyelitis (ME)
  • properly educates medical practitioners
  • and appropriates NIH funding to the figure of a minimum of $250 million a year- which is on par with other similarly burdened diseases

I will continue to challenge and hold the federal government accountable.

 

Promises, Promises: Thirty Years of NIH Broken Promises

 

broken

The pattern of 30 years of NIH broken promises to the myalgic encephalomyelitis (ME) community is continuing unhindered.  Representatives of the NIH ME/CFS Clinical study and the Trans-NIH Working Group make empty, insincere promises. They assure us that our voice and input is essential when in reality their actions entirely dismiss our view.  More alarmingly, it has become apparent as of late that those at NIH responsible for ME research, doubt the biological nature of the disease.  This unscientific hypothesis will affect every process that NIH takes and the result would adversely affect ME patients for a long time to come.

Recently, ME patients and advocates raised critical concerns with the NIH ME/CFS Study (see MEadvocacy blog: NIH Sidesteps Critical Problems with the ME/CFS Study).  NIH refused to move on adopting the many recommendations outlined to them, some of which were: to include the patients and advocates’ voice in every step of the study starting from the planning stages, removal of problematic NIH investigators who believe that the disease is a somatoform disorder, initiating, and maintaining a transparent and two-way communication process between NIH and the ME community (researchers, clinicians, advocates and patients).

A petition started by MEadvocacy, signed by 750 ME community members, and delivered to NIH Director Francis Collins on February 15, 2016, calling for the cancellation of the proposed NIH ME/CFS Clinical Study and restarting with input from the ME community of patients, advocates, researchers and clinicians was ignored and went unanswered.

The following is a more recent incident showing the same disrespect to the ME community.

Since November 3, 2016, the ME community has contested the scheduled appearance of the ME disease denier Edward Shorter as a lecturer on the history of ME/CFS at The National Institutes of Health Clinical Center in Bethesda, MD.  Patients, advocates, researchers, and patient organizations wrote letters to NIH demanding the cancellation of Shorter’s controversial lecture because of his career of spreading unscientific postulations that ME/CFS is a” psychic epidemic” of women who are attention seekers.

Shorter’s lecture took place on November 9th as scheduled, despite mass protests from the ME community including researchers who tweeted and spoke out.  Below is the reply sent by The Trans-NIH ME/CFS Working Group to the members of the ME community which is completely unresponsive and dismissive of the ME/CFS community’s opposition. 

Dear members of the ME/CFS community,

You have written to express concern about the NIH lecture by Edward Shorter that took place on November 9th.  Thank you for sending us your thoughts.

Please know that the lecture you asked about was not sponsored by either the ME/CFS Special Interest Group or the Trans-NIH ME/CFS Working Group, which means that it does not reflect the ideas, opinions, or policy of the NIH or the scientists now working on this disease.  Given the professional and learning environment that NIH promotes, dozens of people come each week to the NIH to exchange ideas with NIH scientists; the scientists who attend these lectures frequently challenge or disagree with the speakers’ ideas. In scientific circles, disagreement with what is said is often more scientifically productive than agreement.  The exchange of information and divergent opinions, followed by critical analysis, is essential to moving any field forward.  The most important thing that we wish to share is that NIH remains firmly committed to using scientific methods to uncover the biological mechanisms that cause ME/CFS and to improve the lives of people who have been suffering for years, and even decades.  Comments made in a seminar will not undermine the progress of science at NIH.

Several of you have asked why the lecture was not mentioned during the telebriefing that NIH hosted on November 2nd.  The telebriefing was intended to discuss the efforts of the Trans-NIH ME/CFS Working Group and the progress made in initiating the NIH Intramural research clinical study.  The lecture was not part of those efforts.

The speaker shared his viewpoint, the scientists who attended asked questions, and perspective was provided by a patient and a community physician. The lecture was attended by approximately 15 scientists, including some who are part of the clinical study investigative team.  It is fair to say it will have no impact on NIH’s interest in doing everything we can to advance the science of ME/CFS.

Regards,

The Trans-NIH ME/CFS Working Group

If you pay close attention to the exact verbiage used in this reply, you will see a prime example of government “double-speak” in an attempt to cover up their transgression.

  • “The lecture you asked about was not sponsored by either the ME/CFS Special Interest Group or the Trans-NIH ME/CFS Working Group”.
    • The use of the word “sponsored” is deceptive.  It implies that the ME/CFS Special Interest Group or the Trans-NIH ME/CFS Working Group didn’t pay for Shorter’s lecture but, it doesn’t tackle the question of who extended the invitation.
  • “Which means that it does not reflect the ideas, opinions, or policy of the NIH or the scientists now working on this disease”
    • The fact that they didn’t “sponsor” Shorter’s lecture does not qualify as proof that it doesn’t reflect the opinions of NIH investigators.  We are keenly aware and have spoken out about the fact that NIH researchers Drs. Walitt, Gill and Saligan, share Shorter’s beliefs that ME is a somatoform disorder. Dr. Walitt has repeatedly quoted and referenced Dr. Shorter in his works and was the one who introduced Shorter at the lecture at NIH.

  • “In scientific circles, disagreement with what is said is often more scientifically productive than agreement.”
    • Yes – a scientific debate is useful and fruitful.  The only problem is that there is nothing scientific about Dr. Shorter’s false beliefs about ME.  It is based on a fantastical myth created in Shorter’s warped mind. 
  • “The most important thing that we wish to share is that NIH remains firmly committed to using scientific methods to uncover the biological mechanisms that cause ME/CFS.”
    • In reality, NIH has not followed through with their words. NIH refused to remove investigators who share Dr. Shorter’s psychogenic views of the disease from the clinical study. In his recent reply to the community, Dr. Koroshetz expresses that Shorter’s viewpoint about ME being psychosomatic is a valuable possibility.
  • “The speaker shared his viewpoint, the scientists who attended asked questions, and perspective was provided by a patient and a community physician.” 
    • Before the lecture, NIH representatives stated that this speech was exclusively for NIH intramural investigators. Outsiders were not permitted to attend.  Somehow one patient and one community physician were present for Shorter’s lecture. Were they used as token representatives so that NIH can “claim” community involvement?

The most important takeaway from this experience is that regardless of whose idea it was to invite (all signs point to Dr. Walitt) Shorter to lecture NIH investigators or who actually “sponsored” it, no one at NIH acted on our opposition and canceled the talk.

Additionally, this ME denier’s fabricated history of ME/CFS which he perceives as a psychogenic social female condition, masked the real history of myalgic encephalomyelitis – starting with several global outbreaks which attest to an infectious component of the disease.  We have many ME historians who are well prepared to lecture about the real historical path of ME.  Professor Malcolm Hooper has written extensively about the history of ME.  Dr. Byron Hyde is an accomplished author writing about the history of ME as well as the science.  Investigative journalist Hillary Johnson authored the acclaimed book Osler’s Web – a well-documented detailed account of the history of the disease. Hillary currently maintains a subscription-based news page, The Eye View, that covers people, politics and scientific developments in the field of ME. History professor, advocate, and patient Dr. Mary Schweitzer is currently writing a book on the history of ME and maintains a blog site, Slightly Alive, where she writes extensively about the historical facts and current events in ME.

me-deniers

Image created by MEadvocacy.org

Despite Walitt’s psychogenic bias of ME, NIH has refused to remove him from the NIH ME/CFS Clinical Study.  Instead, NIH keeps praising him as in the NIH call November 2 with advocates.  Dr. Nath replying to a question asked by patient advocate Eileen Holderman regarding Walitt remaining in the study replied: “And then Dr. Walitt, yes. So Dr. Walitt is a, you know, delightful individual, very experienced. I have full confidence in him. And so he’s doing a superb job putting this protocol together. He has done all the work in helping me.”

HHS’ disregard of the ME community has become a contemptible pattern – signifying a widespread institutional bias.  Although HHS claims that things have changed, their actions disprove their words.

They disregarded and continue to ignore the ME community’s call for:

  • Adopting and using the correct historical name for the disease – myalgic encephalomyelitis
  • Adopting and using criteria created by our ME experts (CCC, ICC and Ramsay’s)
  • Appropriate funding commensurate with similarly burdened diseases – minimum of $250 million annually ($7 million annual increase is an insult and will not accomplish what is scientifically needed)
  • Proper education about the neuro-immune disease ME (not a fatiguing or somatoform disorder)
  • Real input from ME patients and advocates into the process (as opposed to just a perceived seat at the table)
  • Placement of the disease in one of the many NIH institutes, such as the National Institute of Neurological Disorders and Stroke (NINDS) or the National Institute of Allergy and Infectious Disease (NIAID). (Incidentally, ME/CFS still appears under the Office of Women’s Health)
  • Acting on the many recommendations by the Chronic Fatigue Syndrome Advisory Committee (CFSAC)

It is time to reevaluate this broken relationship which is based on false promises, deception, and mistreatment. There is no urgency emerging from NIH in the face of this disabling disease that leaves an estimated million American men, women and children disabled, with no end in sight – many die in their youth, the rest die an average of 20 years early!  Promised RFAs for ME research are delayed by two years, and the amount of money involved remains a mystery.  The increase in extramural funding (which typically consists of 90% of NIH funding) is a meaningless increase of $7 million for 2017.  

We cannot sit by and allow to this slow paced distribution of crumbs to continue. Some in the ME community are so angered by the repeated betrayal by NIH that they are calling for a complete withdrawal – aggressive refusal.  

I agree with this aggressive refusal. We have witnessed the danger of federally funded research by investigators who favor the psychogenic view of the disease with the cataclysmic PACE trial and numerous other such studies by CDC. When all “a seat at the table” means is to enable the government to claim they gave us an opportunity for input yet they never act on our advice and requests – it is time to step away from this falsely implied collaboration and get our congressional representatives involved in advocating on our behalf.  

A congressional investigation as promoted by Dr. Davis of the Open Medicine Foundation might be the only way for us to finally gain respect, equality and fair treatment by the US government health agencies. ME advocates should rise and stand up for the rights of ME patients. Looking away and accepting abuse only reinforces more of the same. We cannot allow this institutional bias to continue with disregard, negligence, and inequality, causing substantial harm to ME patients.

My Comment to MEAction’s #MillionsMissing Protest Demands

The organization, MEadvocacy , their supporters and independent advocates who advocate for the disease Myalgic Encephalomyelitis (ME) and for the criteria CCC and ICC represent a significant percentage of the ME community.  According to Jason’s latest study (as shown below), the majority of the community prefers the name Myalgic Encephalomyelitis (ME) over CFS, ME/CFS  or SEID and selects the CCC and ICC criteria over the IOM criteria.

Therefore, MEadvocacy and independent advocates such as myself, have repeatedly communicated the name and criteria preferences to MEAction to include them in the protest demands but have been cut out of the process time and time again.  Additionally, MEadvocacy and their supporters were excluded when MEAction met with high-level staffers at HHS recently – again shutting out a significant voice in the ME community.

For over 30 years, HHS has used these silencing tactics on ME advocates and now our own “community platform” (MEAction) is using the same tactics against MEadvocacy and independent advocates to silence our voices.

I left a comment on their website Friday afternoon, but unfortunately, it has not come out of moderation yet.  *edit – my comment was just posted 11:24pm along with a reply from MEAction (although the timestamp for my comment shows 9/23/2016 at 4:12pm – which is the time that I posted my comment to their website)

You can read my comment below:

On August 12th, 2016, I sent the following letter to MEAction regarding their MillionsMissing demands:

MEadvocacy sent you a letter before the May 25 protest letting you know that they and their supporters would not endorse demands from the ME community that do not include as a priority the name myalgic encephalomyelitis in conjunction with the ME criteria (CCC and or ICC) – not the CDC or IOM criteria.

Even though I am an independent advocate now, I advocate for the same demands as MEadvocacy.org and their supporters.

I do not support demands to HHS that do not start off with demanding recognition of the real neuroimmune disease ME.  Without this recognition, we are causing harm to the ME patient community.

In addition, to use the name ME without advocating for criteria created by our ME experts is deceitful.  The IOM panel themselves distinguished IOM/SEID from ME and recommended separate coding.

Sincerely,

Gabby Klein

ME advocate – relatingtome.net.

MEAction did not address MEadvocacy’s concerns about the demands in May, nor have they addressed my concerns in my letter to them dated August 12th, 2016.

Their current demands have not changed the wording in section #3 about Education.  They still demand the CDC amend their website and educational information to comply with 2014 IACFSME Primer and with the IOM report supplemented by CFSAC recommendations.

MEadvocacy has shown in their blog – Analysis of CFSAC August 2015 Recommendations for the IOM Criteria that the IOM criteria – even if the CFSAC recommendations are incorporated will result in inferior criteria to the CCC and the ICC.

The majority of ME patients prefer the CCC and ICC criteria over the IOM as outlined by Dr. Leonard Jason’s recently published paper: Patient Perceptions Regarding Possible Changes to the Name and Criteria for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis.  Over a thousand global patients filled out questionnaires about the name and criteria for the disease. The results revealed that 32-35% of respondents approved of the IOM criteria, compared to 58-64% approval of the CCC, and 55 to 58% approval of the ICC.

In addition, myalgic encephalomyelitis was the preferred name chosen by a majority of patients 65-68%.  This demand is not even mentioned in MEAction’s demands to HHS!  

I therefore, cannot endorse MEAction’s demands and would ask MEAction to make it publicly very clear that these demands do not reflect the demands of the majority of ME patients.  

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.