CBT

The ‘Mah Nishtanah’ of ME

/ Gabby Klein / 14 Comments

question-mark-1495858_640

The Jewish Holiday of Passover celebrated this past month, as it is every spring, commemorates the liberation of the Israelites from slavery in Egypt.  Its feature is the Seder when family and friends join together for an elaborate festive meal with specific customs and rituals. For many families, one of the highlights of the Seder night is the Mah Nishtanah, the “four questions” recited by the youngest members of the family.  The questions are about the difference between this night as opposed to all other nights and its purpose is to stimulate interest and thought about the history and traditions involved with Passover.

Isidore Rabi, a winner of a Nobel Prize in physics, was once asked why he became a scientist. He replied, “My mother made me a scientist without even knowing it. Every other child would come home from school and be asked, ‘What did you learn today?’ But my mother used to ask a different question. ‘Izzy,’ she always used to say, ‘did you ask a good question today?’ That made the difference.”

In the tradition of the questions of  ‘mah nishtanah’, I would like to stimulate thought about the history, actions, and state surrounding the acquired neuroimmune disease Myalgic Encephalomyelitis (ME) which manifests itself in epidemic and sporadic form and affects an estimated million American men, women, and children.  There is no FDA approved treatment to date regardless of the fact that it leaves the majority of sufferers disabled from work, housebound or bedbound – some for decades.

From the beginning, when representatives of the CDC were called down to investigate the outbreak at Lake Tahoe in the 1980’s, CDC and other US health agencies have mistreated this disease which has resulted in incalculable harm to the million American men, women and children with ME.  Every item questioned below are actions the government has taken or refused to make based on their attempt to disappear the reality and facts of the real acquired neuroimmune disease ME.

Following the form of ‘mah nishtanah’ questions as in “on all other nights we eat leavened or unleavened bread; tonight we eat only matzah”, here are the questions for ME.

Mah Nishtanah ME Questions

Why is it that:

  • All other complex chronic diseases are named with people’s names, geographical locations or distinctive feature; this complex chronic disease is falsely branded “chronic fatigue syndrome” – after a common symptom of fatigue? (see how diseases are named here)
  • All other complex chronic diseases are defined by non-government medical experts in that specific disease;  this complex chronic disease is repeatedly ill-defined by the government (CDC)? (see Frank Twisk paper here)
  • All other complex chronic diseases are taught in depth in medical and nursing schools; this complex chronic disease is either not taught at all, or mentioned dismissively?
  • All other complex chronic diseases have a medical expertise assigned to them with ample nationwide practitioners caring and treating patients;  this complex chronic disease does not have a distinct medical expertise assigned to it and has very few knowledgeable doctors caring and treating patients?
  • All other complex chronic diseases are placed in a specific NIH Institute who claims responsibility for funding research for it; this complex chronic disease has not been placed in any particular NIH Institute?  (it is currently situated in the Office of Research on Women’s Health which has no specific budget set aside for research)
  • All other complex chronic diseases receive NIH funding commensurate with the disease severity and burden;  this complex chronic disease gets a pitiful fraction of appropriate funding? (see table here)
  • All other complex chronic diseases that render patients unable to of a fair chance to secure Social Security Disability payments; this complex chronic disease has a high rate of denial for SSD, regardless of the severity of symptoms and the disabling nature of them?
  • All other complex chronic diseases that appear in epidemic form are studied for their infectious nature; this complex chronic disease which has appeared in over 50 outbreaks worldwide since the 1930’s (see list here) yet its infectious nature is mostly ignored and covered up by CDC?
  • All other complex chronic diseases have appropriate recommendations for FDA approved treatments; this complex chronic disease has no FDA approved treatments and has recommendations for treatments that are harmful to people with ME (graded exercise therapy [GET] and cognitive behavioral therapy [CBT])? (see a warning about GET from Workwell Foundation here)
  • All other complex chronic diseases that are biological in nature are described, defined and studied as a biomedical disease; this complex chronic disease is falsely labeled, defined and studied as a psychosomatic condition?

Once is happenstance.  Twice is coincidence.  Three times, it’s enemy action.  – Ian Fleming

All these discrepancies and discriminatory actions by HHS are not coincidental.  They all serve the purpose to minimize, marginalize this disease and deflect responsibility from the health agencies whose charge it is to “for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.”

The month of May is awareness month for ME.  It is time to ask the hard questions such as:

  • Why have the government health agencies ignored, neglected and covered up this severely disabling acquired multisystem disease for decades?
  • Why did the government health agencies enable the psych lobby to highjack this disease when they have known for decades that this is a biomedical disease?
  • Why are they so reluctant to properly name and define this disease as recommended by the medical experts and community?
  • How much money has the government withheld with their refusal to properly fund this disease and by their continuous denial of disability coverage?  

This May patients and advocates need to ask deep-seated questions and demand answers. With the insistence and demand that the proper name (myalgic encephalomyelitis) with the appropriate definition (ICC) be used, it will force the government to finally distinguish ME from fatiguing and psychosomatic conditions. It is with this most important distinction that meaningful change will take effect.

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.