February 2015 is a “big month” in ME/CFS advocacy. Two major federal studies, both controversial within the patient community, are issuing their final reports this month.

• The Institute of Medicine study, conducted by a committee of 15 of whom half have expertise in ME/CFS, was charged to review the many case definitions for ME/CFS, devise or recommend a clinical definition, and outline a plan for educating health care providers about the new clinical case definition. In addition, they are to recommend whether the illness should have a new name.
• The NIH’s Pathways to Prevention study is being done by a 5-person panel of experts (none of whom have any expertise in ME/CFS) with input from both patients and ME/CFS experts. Their tasks are focused on research and treatments in ME/CFS: reviewing and evaluating the research studies, including their methodology and limitations, and what they show about what effective treatments. In addition, they are to make recommendations about how gaps in our knowledge can be addressed with further research.

Both of these studies cost money. Although their final cost has not been made public, many patients and advocates felt the studies were unnecessary, and that the money would have been better spent funding more research. They point out that we already have a clinical case definition that is widely used and accepted by clinicians (the “Canadian” or “CCC”) and call for that to be endorsed. They want the name to be changed to ME (Myalgic Encephalomyelitis), which is the name used for this illness in the rest of the world. Everyone wants more money for research.

Some in our community, perhaps discouraged by so many years of illness, lack of funding and lack of progress, discount any government efforts with regard to ME/CFS and see them as ways to appear to be doing something in order to silence our voices. But we have not been silent.

Some voices continue to protest these studies and the processes supporting them, while others work from the premise “if we can’t stop it let’s do our best to fix it.” There is room for both, and we are not one another’s enemy. What has become crystal clear over the last few months is that everyone is working hard in their own way to achieve exactly the same goals:

• standard case definitions for research and clinical use that describe an illness that includes post-exertional malaise, cognitive difficulties (“brain fog”) and sleep disturbances, and removes the primary emphasis on fatigue alone;
• a name that differentiates this illness from “chronic fatigue;”
• a clear statement that the illness is not psychological in origin;
• research to identify the underlying pathologies and treatments to help restore quality of life to patients;
• and well-informed health care providers that are accessible to every patient.

We are all too familiar with what happens when there is no clarity on these issues – the poor quality of much of the “evidence” relating to this illness…research that includes ill-defined study subjects producing results that are controversial… emphasis on psychological “cures” with recommendations for treatments that cause harm to patients…the trivializing name that gives doctors an excuse to dismiss their patient’s symptoms…lack of adequate research funding that discourages researchers from doing the necessary research and discourages new researchers from entering the field. And so the cycle continues.

Does advocacy work? If we make progress on any of the goals above, then yes, our advocacy is working. If the results of the P2P and IOM studies move the federal agencies closer to endorsing clear case definitions (perhaps slightly different for clinical and research, which needs more homogeneous study groups), getting rid of the primary emphasis on fatigue and the name “Chronic Fatigue Syndrome,” allocating more funds for research, and updating their information for doctors, then we will have turned a corner. If it takes these two studies to do it, so be it. Twenty years of testifying and writing letters has not accomplished these changes, but it has finally resulted in these studies. We can consider the money spent on these studies (and also the time that our experts took from their own practices and research to participate) a good investment in our future if the results move us closer to our goals. As patients and advocates, we cannot get there alone. We need the cooperation, backing and funds of our federal agencies. In order to change, they need more “evidence” than just our voices, as sure as we are that we are right.

There is strength in numbers. ME/CFS patients form a world community. In this virtual world, we can be in contact with one another and help each other. Some other countries are far ahead of the U.S. in recognition of ME/CFS and innovative research, but patients everywhere are struggling with the same issues – access to good treatment; dangerous misperceptions and misinformation about the illness on the part of some health care providers; major impact of their illness on quality of life, often for most of their adult life.

What happens in the U.S. matters to everyone – to the over one million patients in this country, many of whom are not properly diagnosed, and to 17 million patients around the world. Important research is going on in many countries, but the NIH is the world leader in funding medical research and could and should be doing much more. If our efforts have helped to achieve progress toward our goals in the U.S., then our advocacy, from patients in this country and from around the world, works. We will soon see.

With warm regards,

Charmian Proskauer, President
Massachusetts CFIDS/ME & FM Association