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!
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.