News - NETWORK NEWS

Dear Friends

There are developments at the Canadian Institutes of Health Research (CIHR) which cause the National ME/FM Action Network great concern. CIHR is confusing Fibromyalgia with chronic pain and with symptoms of rheumatic diseases.

Let's start in March 2014 when CIHR promised to hold a research workshop for the ME/FM community. The Network then received an invitation to a September research workshop with the theme of “Chronic pain and fatigue.” The invitation list included people from the ME/FM, chronic pain and arthritis communities. The Network was not clear whether this was the promised workshop or not. Knowing that chronic pain and fatigue is a misleading theme for ME/CFS and FM, we considered not attending but decided to go to try to build communication.

The workshop included presentations on Fibromyalgia, opiate use and ME/CFS. Another presentation was on a generic process that brings together patients, carers and clinicians dealing with a particular medical issue. The patients, carers and clinicians are asked to identify their top 10 unanswered questions about the effects of treatments. The agreed-upon list is then publicized with the hope that researchers would take on the topics and that funders would fund them. The person giving the presentation had participated in a priority-identifying process for kidney dialysis which had taken a year to complete.

A positive outcome of the September workshop was the designation of a research fellowship for ME/FM. Having received no other news, we contacted CIHR in early December 2014 asking what the next steps would be. In the reply we were told that a priority-identifying process was going ahead for Adult-Fibromyalgia and that a steering committee had already been established.

We asked for a list of steering committee members, figuring that the composition of the committee would say a lot about CIHR's understanding of Fibromyalgia and about whom they think should be in charge of identifying the priorities of Fibromyalgia patient, carers and clinicians. We were advised that the committee is chaired by a rheumatologist from McGill University. The other members of the steering committee are:

·         the Scientific Director of CIHR's Institute of Musculoskeletal Health and Arthritis who has been assigned responsibility for ME/CFS and FM;

·         a Kingston family doctor who focuses on chronic pain, chronic pain self management programs and mindfulness based chronic pain programs and who is the chair of the chronic pain program committee of the College of Family Physicians of Canada;

·         an assistant professor in the rheumatology section of the department of pediatrics and child health of the University of Manitoba;

·         an associate professor of psychology from UBC who studies cannabis issues;

·         the University of Toronto professor who gave the presentation about the priority-identification process at the September2014 workshop;

·         the president (a patient) of Chronic Pain Coalition of Canada which describes itself as “a Partnership of patient pain groups, health professionals who care for people in pain, and scientists studying better ways of treating pain,”;

·         three individuals – no affiliations listed.

The chair of the steering committee was the lead author of the 2012 Guidelines for the Diagnosis and Management of Fibromyalgia Syndrome (see Quest 92). Here are some points around those Guidelines that raise red flags:

·         The 2012 Guidelines do not mention the 2003 Clinical Case Definition for Practitioners for Fibromyalgia Syndrome, spearheaded by the National ME/FM Action Network, even though the 2003 case definition was approved unanimously by the international panel of experts who were selected by their peers and appointed by Health Canada and even though the case definition was published in a peer reviewed journal.

·         Despite the fact that the 2012 Guidelines have major impact on the Fibromyalgia community, there was only one “patient representative” on the guidelines committee and there was no indication that she represented an organization. The National ME/FM Action Network was never consulted in developing the Guidelines.

·         The 2012 Guidelines showed no role for rheumatologists in diagnosing or treating Fibromyalgia (which leads us to ask why there are three rheumatologists on the steering committee , the chair, the CIHR representative and the assistant professor from Manitoba.)

The steering committee chair is also the person who gave the presentation on Fibromyalgia at the September workshop. You can access the presentation here: The presentation mentions several case definitions but again omits the 2003 Clinical Case Definition for Fibromyalgia Syndrome spearheaded by the National ME/FM Action Network. Omitting this Fibromyalgia definition makes the presentation appear lacking in objectivity.

The workshop presentation says that Fibromyalgia would ideally be called “chronic widespread pain”. Chronic pain is a broad topic. We know from the statistics in Quest 101 that only about 10% of Canadians whose lives are moderately or severely affected by pain have a diagnosis of Fibromyalgia. Back in 1988, ME was labeled “chronic fatigue syndrome” with disastrous results. Highlighting one of the symptoms and ignoring the other symptoms of Fibromyalgia would cause a major setback. The workshop presentation also seems to equate Fibromyalgia with symptoms of rheumatic diseases which would be a radical shift in definition. The presentation goes further by calling Fibromyalgia a “clinical construct” and a “grab bag diagnosis” and by warning against over-medicalizing. In a completely baffling statement, the presentation says “Do not apply criteria to diagnose individuals”.

Even after viewing this presentation, CIHR wrote that it considers Fibromyalgia to be a “well-defined clinical question” and put the workshop presenter in charge of the steering committee for the priority-identification project. With the confusing set of definitions and the confusing composition of the steering committee, the Network questions whose priorities will be identified and where CIHR is going with Fibromyalgia research.

The National ME/FM Action Network understands the importance of identifying research priorities for Fibromyalgia, chronic pain and rheumatic diseases, but these are separate topics and cannot be combined. We are not supportive of research into other conditions pretending to be research into Fibromyalgia. The National ME/FM Action Network understands the fundamental importance of developing good case definitions and sticking with them. We have seen the terrible problems that resulted from confusing ME/CFS with chronic fatigue or psychiatric conditions. We are not going to allow Fibromyalgia to be confused with chronic pain or symptoms of rheumatic diseases. We will be asking both the ME/CFS and the Fibromyalgia communities to support us in the battle to ensure that Fibromyalgia keeps its identity.

People with Fibromyalgia have enough challenges to conquer without being swallowed up and disappearing into the world of chronic pain and rheumatic diseases.

Our aim as always is DO NOT REACT TO UNFAIRNESS BUT ACT FOR CHANGE.

Lydia