May 12th National FM/CFS/ME Awareness Day

May is a busy month for our ME/CFS and Fibromyalgia community. These activities are centered around May 12th, the International Day of Awareness. How will you mark May 12th this year? Here are some things you can do…

  • Dress up! On May 12th, wear blue (for ME/CFS) or purple (for Fibromyalgia).
  • Facebook – change your profile picture to something related to May 12th. Share basic facts about the illness in your postings this month. “Like” the Massachusetts CFIDS/ME & FM Association Facebook page and share some of the postings that you find interesting.
  • Read about the origins of May 12th and why it is so important – you can also get a blue or purple ribbon image for your computer. For more information see
  • Learn a bit about the sad history of ME/CFS to share to friends and family – see the guest column from Dr. Alan Gurwitt below.
  • Attend a demonstration – for details on two, please see below.
  • “Even if you can’t demonstrate, you can still contribute.” In honor of May 12th, our Association is again collecting money for research. All funds collected will be donated to Dr. Ian Lipkin’s Microbe Discovery Project. Get more information and donate below.

For May 12th, ME/CFS Awareness Day

By Alan Gurwitt, M.D.
In the 1980’s in this country there was an epidemic of significant proportions that began to afflict people over much of the nation. It may have appeared earlier but there were noticeable numbers of this disease in upstate New York, the Lake Tahoe area, and in North Carolina where astute doctors recognized that there was an illness they had not seen before. Their patients were reporting extreme fatigue, all sorts of cognitive problems, inability to recover normally from exertion, difficulties sleeping with little refreshment from that sleep, difficulties with standing plus many other symptoms. Often the illness came on abruptly, sometimes slowly. It afflicted all age groups but was particularly common in adults and mostly in women, though one epidemic affected mostly children. It was a strange multi-systemic illness.
Judging from the experiences of many patients, a quiet epidemic also hit New England in the mid 1980’s. Sometimes other family members came down with the illness as well.
After the two physicians in the Lake Tahoe area notified the CDC of a cluster of patients with this new illness there was a CDC investigation. The investigators, for unknown reasons, didn’t take the mysterious malady seriously. A sloppy investigation was carried out and a hugely important opportunity was missed.
In 1988 the CDC at least recognized that there was an illness that became chronic. The origins were unknown, the course of the illness not clear. They gave it the name Chronic Fatigue Syndrome or CFS and initiated the first American set of criteria for diagnosis. These criteria were not complete nor very useful. Practicing clinicians did not have much to go by.
Apparently not known then by the CDC, a similar illness had occurred 30 years previously in the UK. The epidemics there were carefully studied by physicians in London. Melvin Ramsey and others described what looked like a neurological disorder. They recognized that many other body symptoms were present but they chose to call it benign Myalgic Encephalomyelitis or ME.
It was not long after the publication in both countries of articles in medical journals that psychiatrists began to throw about terms like “mass hysteria” and theories of supposed psychological causation were expounded. In the U.S. patients were labeled with “Yuppie Flu”. The same psychiatrists in the UK who propounded the psychological causation theory became consultants to the CDC—a transatlantic contamination. Even though some American physicians recognized that there was indeed a new biological illness that was often severe and disabling, they were ignored or made to look foolish. As the tidal wave of psychological theories flooded American medical establishments, ignorance abounded and patients were misdiagnosed, inadequately treated, and sent for unnecessary psychiatric evaluations. It was the rare healthcare provider who publicly admitted he or she was willing to say that CFS was a real biological illness and quietly agreed to see patients with CFS. Most either dismissed their patients as having a psychosomatic illness or, if they recognized the illness as real, biological and crippling, they kept their views to themselves.
At first in the U.S. this seemingly strange illness that looked like no other had been seen as an infectious malady with the Epstein Bar virus implicated as the culprit, but as the psychosomatic school began to prevail, attempts to carry out needed biological research mostly collapsed at the CDC, NIH, in the UK. The relatively few physicians who treated patients or did research were either dismissed or found their careers in jeopardy.
When advocates for patients reached members of Congress some pressure was put on federal health agencies. Those agencies went through the motions of responding but quietly dismissed any really significant attempt to do appropriate research. The CDC absconded with 12 million dollars of research monies that were to be spent on CFS, diverting that money to other illnesses. The NIH, with over 30 billion dollars, has only provided miniscule amounts to CFS research over the years.
Medical journal editors were reluctant to publish any papers on CFS except examining the psychological aspects. The New England Journal of Medicine has never published any article on CFS. Only a tiny proportion of medical schools teach anything about the illness.
CFS occurs in children and adolescents but the prevalence was unknown. Only recently has a definitive study been initiated.
In the mid to late 1980’s patient advocacy and help groups began to organize to assist patients with CFS, the Massachusetts CFIDS Association being the first.
We are nearing the 30 year mark since the epidemics of the mid-1980s in the U.S. Some progress has been made. Most healthcare professionals still think CFS is a psychosomatic phenomenon but more and more physicians are beginning to believe it is real but don’t know how to diagnose and treat it. Primers to help medical personnel do just that have been published privately in the USA, in Australia and the UK for international audiences. There is no longer any absence of educational sources.
The Massachusetts Department of Public Health recognizes CFS as a medical illness, now also known as Myalgic Encephomyelitis (or Encephalopathy).
There has been significant progress over the years in understanding the basic body pathologies underpinning ME/CFS. Most of the wonderful advances in our understanding have come from courageous clinicians and researchers now mostly funded by private foundations. (Except for the FDA and Social Security Administration federal government assistance has been feeble.) More countries have recognized ME/CFS as a medical illness. Researchers are striving to find biomarkers that definitively show that patients have the illness. We are close but not quite there.
While some patient advocacy groups have fallen, many of those remaining are starting to work together so as to have greater clout.
May 12th, started by Tom Hennessy in 1992, has long been CFS Awareness Day. We have much reason to be hopeful but there is much more work to be done in terms of basic and clinical medical research, advocacy, education of healthcare providers, and obtaining funds for research.
There is much reason for hopefulness, but we all need to keep up the good work.
Alan Gurwitt, M.D.
Dr. Gurwitt is a past president of the Massachusetts CFIDS/ME & FM Association, and now serves as chair of the Association’s Medical Advisory Committee. He was one of the authors of the first CFS Primer, published by our Association, in 1992. He is also on the authoring committee for the IACFS/ME Primer for Clinical Practitioners (2012, revised in 2014) and is now working with others on a Pediatric Primer.

Two demonstrations on May 12th


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May 2014
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