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Emperor CDC’s New Clothes

/ Gabby Klein / 3 Comments

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The much-anticipated revision of CDC’s website on ‘ME/CFS’ section “Information for Healthcare Providers” was unveiled July 12, 2018.  The main reason for the revision was to adopt and educate medical professionals to diagnose people using the government-sponsored clinical IOM/SEID criteria and to update the toolkit based on current scientific data. 

The result of the CDC website update is full of deceptions and in many ways worse than the old toolkit for medical professionals.

Problems and Danger with Adopting and Using the IOM/SEID Criteria

ME advocates have warned that the 2015 government-sponsored IOM/SEID criteria are even worse than the failed and highly criticized government 1994 Fukuda definition.  Critics of the Fukuda definition argue that it was overly broad with too much emphasis on the one common symptom ‘fatigue’. The IOM/SEID definition is even more vague.  Unlike the Fukuda, it doesn’t specify exclusions which means that many people suffering from primary psychiatric and psychological conditions will get a diagnosis of IOM/SEID.

Even worse, the new criteria do not demand any neurological nor immune dysfunction symptoms! Investigators (Dr. Leonard Jason, Frank Twisk and Asprusten et al) who have looked into the IOM/SEID criteria and published papers comparing it with other definitions have warned that it does not define the neuroimmune disease myalgic encephalomyelitis (ME) as defined since 1969 by the World Health Organization (WHO) and coded under Neurological disorders as ICD – G93.3.

The IOM authors clarified this distinction as well.  They stated that the entity they were defining was not a neurological one.  It was a broader entity with subsets which remain to be defined.  They were clearly not defining the distinct disease ME as per our international non-government medical ME experts with their 2011 International Consensus Criteria (ICC). This comparison chart created by the patient organization MEadvocacy.org is an easy visual tool that illuminates the difference.

The danger of using the broad IOM/SEID definition is that the pool of patients diagnosed will be a muddied group.  It will be harmful to those who suffer from ME as per ICC and those who suffer from other conditions for which they lack proper diagnosis.  To properly treat patients one needs to identify precisely the disease they suffer from. It would be like throwing people who suffer from rheumatoid arthritis and osteoarthritis together under one rubric because they share many of the same symptoms. This conflation would be dangerous because as we know, the treatments are entirely different.

Even more alarming, ‘ME/CFS’ investigators working at NIH funded ‘ME/CFS’ consortia are currently using the clinical IOM/SEID to select their cohorts in their studies!  Using this faulty criterion will cause the group to be made up of people suffering from different conditions. The results will be skewed whether searching for a biomarker or successful treatment options. It will be impossible for future researchers, who are unfamiliar with the criteria issues, to duplicate studies as they will have no way to know how to select patients correctly.

Harmful GET recommendation Without the Name Remains on Website

CDC’s previous toolkit for providers recommended graded exercise therapy (GET), stating: “Graded exercise therapy (GET) has shown to be very helpful to some CFS patients. Graded activity and exercise are defined as starting from a very low, basic level of exercise and/or activity and gradually increasing it to a level where people can go about their daily life. NOTE: the level of activity may not be the same as before the CFS diagnosis.”

CDC’s current toolkit treatment section recommends: “Patients who are tolerating their current level of activity and have learned to “listen to their bodies” might benefit from carefully increasing exercise to improve their physical fitness and avoid deconditioning Some healthcare providers with expertise in ME/CFS refer their patients to an exercise physiologist who understands ME/CFS and uses an individualized and flexible approach to advancing activity levels.” [bolding for emphasis]

CDC is in effect still educating doctors to recommend people with ‘ME/CFS’ exercise incrementally.  This description is what graded exercise is, and it is genuinely devious of CDC who many in the community have hailed for supposedly removing GET from their toolkit, only to see them re-introducing it in a concealed manner.  ME advocates and patients who have been on this road with CDC for decades are not surprised at their repeated deceptions. Their malfeasance has no bounds, and they will do anything to cover-up the reality of the neuroimmune disease ME which has appeared in many worldwide outbreaks and the sporadic form.

Dangers of Conflation Which Result in the Burial of ME

CDC states: “There is no consensus on whether CFS and ME are synonyms, different spectrums of the same illness, or distinct conditions.”

These words describe the crux of the problem with the government’s attempts to cover-up ME.  It benefits HHS to keep it all a big, muddied, confused heap of nothing.  It has been their intention from the start – to make ‘CFS’ go away. As a 1994 letter obtained through FOIA effort by advocate Craig Maupin from NIAID’s Dr. Straus to Dr. Fukuda states:

“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.“

HHS and its agencies have purposefully acted to conceal the fact that this is a distinct disease with its distinguished history.  They have repeatedly misbranded (CFS, ME/CFS, SEID), misdefined (Fukuda, Reeve’s, IOM/SEID) the disease to keep the confusion going.  They have also falsely combined ME with CFS as in ME/CFS to perpetuate the confusion. It’s like calling a disease lung cancer/cold!

In the same vein, HHS repeatedly refuses (in contrast with other diseases) to accept and adopt criteria created by the international non-government experts in the disease [Canadian Consensus Criteria (CCC) and ICC] which clarify and distinguish ME.  With the same concealment tactic, CDC erased our experts’ criteria CCC and ICC from their resource section.

Other Tactics Used by CDC to Minimize the Disease

  • CDC prides itself on the use of evidence-based scientific data, yet they state on their new website “Some patients return to full function” as if that is a scientifically proven fact.  Which evidence-based studies is CDC relying on when making this positive statement?  I would argue that there is more evidence of people with ME #(pwME) dying from ME than fully recovering from the disease.
  • In their Spectrum of ‘ME/CFS,’ CDC states: “For example, patients mildly impaired by ME/CFS may be able—with careful planning and activity management—to keep a job or continue their education, participate in social and family activities, and attend to daily life.” This statement gives the false impression that pwME if managed well, can perform normal activities of life.  It is a false assumption and does not ring true with pwME. For an ME diagnosis, pwME need to have extensive reductions in previous activity.  Activity management might ensure that they do not aggravate their condition and avoid crashing but, it does not improve their base condition.
  • CDC states: “From a clinical perspective, case definitions are used to make the appropriate diagnosis and guide therapy and management. From a research perspective, case definitions are used to identify the appropriate study population. Multiple case definitions may be required for different applications and can co-exist if there is a good understanding of how they are being used.” Historically, HHS has conflated the purpose of criteria.  They have used definitions whose goal was for research, in clinical settings and vice versa.  ‘ME/CFS’ investigators are already using the clinical IOM/SEID definition for studies at the NIH funded ‘ME/CFS’ research consortia – despite assurances it by HHS they would solely be used for clinical purposes!
  • In CDC’s attempt to conceal any possibility of an infections agent playing a role in ME, they have omitted the history of ME and the fact that it appears in the epidemic for with 50+ worldwide outbreaks.

It is alarming to see this revised CDC criteria in 2018 – more than 30 years after CDC was called down to investigate the massive Lake Tahoe outbreak.  The name, definition and data do not reflect the findings at Lake Tahoe nor the WHO 1969 defining  ME under neurological disorders nor the 2011 International Consensus Criteria defining the distinct disease ME.

ME advocates worldwide are rightfully aligning in their fight against the PACE Trial with their recommendation of the harmful treatments of graded exercise therapy and cognitive behavior therapy.  ME advocates need to do the same with CDC’s revised website which is deceptive because like the Emperor’s New Clothes – it is just more of the same wrongdoing. ME advocates need to rigorously fight CDC’s dangerous recommendation of GET and their use of the vague IOM/SEID definition which will result in the burial of the distinct disease myalgic encephalomyelitis. 

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

/ Gabby Klein / 2 Comments

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.