Myalgic Encephalomyelitis International Consensus Primer Needs to be Distributed to Doctors

[Nielk]

Why There Is an Urgent Need to Widely Distribute the Myalgic Encephalomyelitis International Consensus Primer to Doctors
by Jerrold Spinhirne, December 17, 2014 HERE.

The confusion and delay resulting from the recent December 9-10, 2014 National Institutes of Health (NIH ) Pathways to Prevention (P2P) Workshop on "ME/CFS" and the issuance of the Agency for Healthcare Research and Quality (AHRQ) Evidence Report No. 219 "Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" [Smith, 2014] emphasize the urgent need for the 2011 Myalgic Encephalomyelitis: International Consensus Criteria (ICC) [Carruthers, 2011] and particularly the 2012 International Consensus Primer for Medical Practitioners (IC Primer or ICP) [Carruthers. 2012], to be widely distributed to doctors, medical personnel, medical professional organizations, medical schools, and hospitals in the US. The reasons why this is necessary are as follows:
Myalgic Encephalomyelitis Is Not a Fatigue Syndrome
Myalgic encephalomyelitis (ME) is a distinct neurological disease described in the medical literature since the 1930s [Gilliam, 1938] and recognized by the World Health Organization (WHO) since 1969. Classic descriptions of the disease, based on thousands of cases, [Acheson, 1959; Ramsay 1986] and the 2011 ME ICC [Carruthers, 2011] do NOT list unexplained fatigue, or any type of perceived, self-reported fatigue, as a diagnostically useful symptom of ME. Table 2 on page 14 of the AHRQ report [Smith, 2014] clearly shows that of the eight case definitions considered by the report, only the ME International Consensus Criteria case definition does not use fatigue as a criterion for diagnosis.
Indeed, people with ME do experience profound fatigue, but so do people with other serious neurological diseases such as multiple sclerosis (MS) and other forms of damage to the brain such as traumatic brain injury (TBI). Self-reported fatigue is a common feature of many medical diseases and psychiatric disorders, and, therefore, is not useful for making a differential diagnosis. Self-reported fatigue is a subjective and often retrospectively recalled experience that cannot be objectively measured. Self-reported fatigue can only be assessed using unreliable paper-and-pencil or computer-assisted questionnaires that produce highly variable and unstable results.
There is no research that indicates there is a correlation between changes in scores on fatigue questionnaires and changes in the underlying disease process of ME. Fatigue questionnaires, therefore, are of little or no use for measuring the effectiveness of various treatments for ME. CFS, on the other hand, is based on the subjective symptom of unexplained fatigue so an argument can be made that changes in fatigue scores indicate improvement or worsening of the condition in CFS-labeled patients or CFS-labeled research subjects.
Eliminating subjective fatigue as the defining characteristic and requiring a positive diagnosis based on objectively measurable features, as opposed to the CFS diagnosis of exclusion, further refutes the spurious claims that ME is based on medically unexplained symptoms (MUS) and can be considered a functional disorder or a "bodily distress syndrome." The authors of the ICC make a strong case, supported by published research, that ME symptoms are not medically unexplained and that ME cannot be considered a functional disorder without observable and measurable physical abnormalities.

According to the US Centers for Disease Control and Prevention (CDC), chronic fatigue syndrome (CFS) is a diagnosis of exclusion – that is, CFS cannot be diagnosed until all other diagnoses that may account for a patient's reported fatigue are ruled out. [Fukuda, 1994] No single patient, therefore, can simultaneously qualify for both a CFS and an ME diagnosis. In other words, ME and CFS are mutually exclusive diagnoses. If a patient meets diagnostic criteria for ME, he or she cannot rationally be diagnosed also with CFS because the ME diagnosis accounts for any fatigue reported by the patient – just as a cancer, rheumatoid arthritis, or multiple sclerosis diagnosis would do. However, how can doctors rule out ME, in keeping with the CDC's CFS diagnosis of exclusion concept, if doctors do not have reliable, peer-reviewed, up-to-date diagnostic guidelines exclusively for ME?
Doctors in the US, therefore, need to have the IC Primer so they can make the differential diagnosis of ME rather than assign patients with ME to the broad, unexplained-fatigue-based diagnostic category of chronic fatigue syndrome.

Continue HERE.

 

[AndyPandy]

I have given copies of the IC Primer to three GPs so far. None of them were interested enough to read it.

I have given up on getting anywhere with GPs. Fortunate to now have an ME specialist in Australia.

 

[Valentijn]

I have given copies of the IC Primer to three GPs so far. None of them were interested enough to read it.

Mine browsed the Dutch CCC primer I gave her. I'd done it to specifically refer to the OI bits, and highlighted them to make it easier. But I think she read more than that as well, based on her later attitude/comments. It's a pity she doesn't really have the authority to do anything for me, because she seems both intelligent and generally good-intentioned. Just overwhelmed and powerless.

 

[snowathlete]

Judging by a new paper from the UK, we ought to send it to Occupational Health professionals too:
Evaluating Interactive Fatigue Management Workshops for Occupational Health Professionals in the United Kingdom
Other parties are actively spreading misinformation so we need to spread corrective info too.

 

[b-c]

...

I have given up on getting anywhere with GPs. Fortunate to now have an ME specialist in Australia.

Hi AP and all,
i'm new here - been reading for a while just trying to get my self across the lay of the land, and understand what's going on for me. So this is my first post.

AP - are you willing/able to share the name of that specialist?

I've read the primer cited above and given it to both my primary health professionals. I'm in Australia too (South east coast) and while my GP is supportive, she is 'no expert' and hasn't really tested for a lot of the detail of symptoms involved in ME, which i seem to have. I also have a great herbalist who is helping me a lot and has helped numerous people with ME/CFS - but again, there seems little interest in some of the details and the possibility of distinction btw ME and CFS.

cheers

 

[JaimeS]

Welcome, @b-c !

 

[AndyPandy]

Hi @b-c. I will send you a personal message. It's called a "conversation".