- Last Updated: 08 December 2015 08 December 2015
In Honor of May 12th - International Awareness Day for ME/CFS and Fibromyalgia
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 www.may12th.org.
- 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
A QUIET AND MOSTLY IGNORED MEDICAL EPIDEMIC
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
May 12th Demonstration at HHS Headquarters in San Francisco
On Monday, May 12, 2014, from noon -1 PM, there will be a gathering at the Federal Building located at 90 Seventh Street in San Francisco. This is a special May 12th for people with ME/CFS. It marks the 30-year anniversary of the Incline Village outbreak that brought the disease onto the world stage, and dubbed it with the name "chronic fatigue syndrome." Over the last 30 years, the illness has affected more than a million people in the U.S. We have seen progress in research, but HHS has done nothing to promote further understanding of the disease, or to halt its spread.
The theme of this event is "30 Years of Neglect." To drive home the point that ME/CFS is a serious disease that not only disables, but can be fatal, we will be displaying pictures of people who have died of ME/CFS in empty wheelchairs. We will read their obituaries. Afterwards, we will go to McKesson Plaza, 5 blocks away, to take our message to Senator Dianne Feinstein.
This will be a peaceful demonstration (we have a permit).
Please join us! Friends, family and supporters are welcome!
Capitol Building, Washington, D.C.
Every year, the ME community holds a day of awareness on May 12th to highlight the plight of patients with ME and also FM, GWI and MCS. This May 12th is especially important to the ME community because this is the thirtieth anniversary of the ME outbreaks in Incline Village and Lyndonville. Thirty years of bad definitions, bad medical education and virtually no research funding. Thirty years of neglect in which ME experts have been ignored and ME patients have been abandoned. This must stop!
Our representatives in Washington need to hear from us. There will be a demonstration on May 12, 2014 in Washington, D.C. from 12:00 to 1:30 PM. The demonstration will be on the east side of the Capitol Building off of First Street NE. (Map here).
Posters and banners will be provided which highlight the lack of funding, the call by experts to adopt the CCC and the devastation and death that ME can cause. For those who plan on also visiting their legislative leaders, a fact sheet will be provided.
The federal government needs to see that we care! If you are in the Washington Area, please join us!
But if you can't make it to Washington, you can still participate by contacting your legislative leaders. Additional information along with a sample letter will be provided shortly.
Funds for Research – Dr. Ian Lipkin's Microbe Discovery project
This year, in honor of May 12th International ME/CFS Awareness Day, Massachusetts CFIDS/ME & FM Association is again collecting money for research. Your contribution of even a small amount, when combined with gifts from others, will help to fund an important research project. We have chosen to put our combined contributions toward Dr. Lipkin's Microbe Discovery Project. He needs $1 million to do this study, and is asking the community to help. You can read more about the study here.
Dr. Lipkin believes that microorganisms that live in our gut (the "microbiome") may be the key to the chronic immune activation that is one of the hallmarks of this illness. Dr. Lipkin has the study design, the world's most advanced research equipment and methods, the patient samples and the scientists ready go to, and with funding, he can complete the study within 12 months. He believes that this work has "potential to swiftly lead to treatments using drugs, probiotics or exclusion diets." Let's work together to see what we can learn by May 12, 2015!
Please donate now – this campaign will end on June 30, 2014, and all funds collected will be sent to support Dr. Lipkin's research.