International Awareness Day has been around for at least two decades. For those afflicted with ME/CFS and/or FM it’s been a long and wild ride.

For this anniversary of International ME/CFS and FM Awareness day Health Rising focuses on “awareness” with some facts and thoughts about ME/CFS and FM and provides an opportunity to contribute.

History

Fibromyalgia was called  “muscular rheumatism” in the 1800’s and tender points were first described way back in the 1820’s. Before it was called fibromyalgia – a name that still doesn’t fit –  FM was called “fibrositis”. No new names for the disorder are in sight (thankfully) (Fibrocenter)

The Short EBV Era in ME/CFS

The first account of ME/CFS in the modern era (post-1980) may have been a 1982 review of two cases of “familial chronic mononucleosis”. “Symptoms were chronic malaise and fatigue; recurrent upper respiratory tract infections; and mild, variable immune abnormalities. The authors believed alterations of the Epstein-Barr virus lead to a chronic active infection and a syndrome of chronic mononucleosis.

First Looks – Nine of the first ten clearly recognizable papers on chronic fatigue syndrome around 1987 were on Epstein-Barr virus. The tenth was on natural killer cells.

International Awareness Day

First account of ME/CFS in the New York Times – Jane Brody in 1985 reported on a person suffering for 10 years from recurrent fevers, sore throats, fatigue, joint pains, depression and headaches, and thinking problems. The diagnosis: chronic Epstein-Barr Virus infection 

Last Looks? Almost thirty years later a German study finds considerable evidence of EBV reactivation in ME/CFS. Then this year Dr. Montoya speculates more herpesviruses will soon be identified – and perhaps associated with ME/CFS.  Plus, Dr. Pridgen finds evidence of another herpesvirus in FM patients guts. The herpesvirus era lives on in ME/CFS and may be starting in FM.

Surprise Quote – Who said this? “People with CFS are as sick and as functionally impaired as someone with AIDS, with breast cancer, with chronic obstructive pulmonary disease ” *See end of section

Brooklyn Bridge Builder Had ME/CFS-like Illness – After collapsing with a case of the bends while working on the bridge, Washington Roebling, suffered for the rest of his life from what appeared to be a case of ME/CFS. His critical faculties were intact but he was unable to move or tolerate stimuli such as light or much noise without relapsing.  He oversaw the construction of the big bridge over the next ten years from his bed.

* Bill Reeves of the CDC

Treatment

Back to the Future? – Thirty years ago the major component of Dr. Goldstein’s resurrection cocktail for ME/CFS consisted of ketamine. Some researchers now believe ketamine type drugs are the future for relief from depression and pain. (See The Ketamine Question in Fibromyalgia and Chronic Fatigue Syndrome

In the last year over 80 randomized, controlled trials were conducted in multiple sclerosis; in the last five years ten were done in ME/CFS.

New Options For Pain Under Investigation – Chronic pain is the biggest single problem facing the medical profession. It’s been dominated by opioids but some options are beginning to open up. Vagus nerve stimulation (coming soon on Health Rising), ketamine-based drugs, ion channel blockers, microglial inhibitors, deeper and deeper ranging transcranial magnetic stimulation efforts, autoimmune treatments and medical marijuana are all being explored as options to opioids in the treatment of chronic pain.

Pfizer Not Singing Pretty About Lyrica –  Lyrica busted the door open for drugs in FM and has been a HUGE money-maker for Pfizer. In fact Lyrica, also approved for forms of peripheral neuropathy  is still Pfizer’s biggest money maker…… but perhaps not for long. Pfizer was hit hard when Lyrica and Celebrex went generic in the UK and some European countries.  It was also hit by a $43 million dollar judgment for marketing Lyria for conditions it was not approved for (chronic pain and migraine) and for reporting Lyrica was better then Neurontin, the drug it replaced.

Numbers

 So Where is Everybody? – Prohealth’s Fibromyalgia Facebook site has over 250,000 followers. It’s chronic fatigue syndrome site has 51,000.  SolveCFS has 15,000 Facebook followers, Phoenix Rising has 12,600 subscribers, Health Rising – 5,500. At least 5 million people with ME/CFS and 50 million with fibromyalgia live in English speaking countries……

The “It’s Not Just ME/CFS Theme” – Part I  – Migraine ($21 million ), interstitial cystitis ($10 million), fibromyalgia ($11 million), chronic fatigue syndrome ($6 million) affect millions of women, cause considerable disability, generally do not kill people and get lousy funding relative to other diseases. The message is – if a disease mostly affects women and doesn’t kill them, even if it affects lots of people and causes huge amounts of distress and economic losses- the NIH is not interested. 

The “It’s Not Just About ME/CFS and FM Theme –  Pt II”… – A new book on migraines  “Not Tonight: Migraine and the Politics of Gender and Health” explores how gender has played a role in the low funding and attention given to migraines.  “Kempner’s premise is that this gender inequity makes an enormous difference in how migraine is studied and treated, as well as how migraine drugs are marketed.” 

Painful Fact – The NIH spends more money researching multiple sclerosis every year and a quarter, than it has ever spent on ME/CFS

Surprising Fact –  The NIH spends significantly less money per patient on fibromyalgia (@$1) than it does on ME/CFS (@$5)

The most expensive ME/CFS study ever? The 600 person, five year approximately PACE trial funded entirely by the UK government. (It also funded the large FINE trial. Neither amounted to much…)

Say What? The United Kingdom spends a greater portion of its research budget on ME/CFS than does the U.S.

The Everywhere Disease – As many as 50% of people with rheumatoid arthritis, 17% with multiple sclerosis and 13% percent on dialysis may fit the critiera for fibromyalgia.  In fact all pain conditions probably trigger FM in a significant subset of patients. Since those patients tend to be considerably sicker, take more drugs and cost more money than the patients without FM, the NIH is missing out on helping a lot of people by its paltry funding of FM.

Others

Connections –  Cancer survivors experiencing “chemo-fog” appear to have similar brain dysfunctions as people with ME/CFS.

It Happened in Breast Cancer: It Could Happen with ME/CFS and FM – Breast cancer wasn’t even talked about at one time. Now it receives $700 million a year in funding. According to one analysis four key things happened.

1. “Priming the Market” – Public figures (Betty Ford, Nancy Reagan) started talking about it.
2.  “Engaging Consumers” – Established diagnostic guidelines encouraged women to get breast exams and major advocacy organizations emerged.
3. “Establishing Political Advocacy” – Breast cancer advocates joined together in the 1980s and 1990s to work toward legislative, regulatory, and funding changes, such as passage of the Mammography Quality Standards Act and increased funding for the National Cancer Institute. Funding quadrupled.
4.  “Taking Advocacy Mainstream” 

The Post-infection Syndromes  – More Present – More Impactful – Than We Thought – Measles produces a profound suppression of the immune system up to three years after it has been eliminated. Many people who survived the Ebola Virus still experience significant pain and fatigue six months later. Simply having been exposed to the cytomegalovirus herpesvirus produces a profound and lasting reorganization of one’s immune system. The research world is learning more and more about the down-side of seemingly eclipsed infections.

Another Trigger – A New York Times story suggested that a subset of people who end up in intensive care experience a long-term ME/CFS/FM- like illness.

SEID Absolved? – The World Health Organization’s disease name change guidelines published this month recommends names like, er…… SEID be used.

Contribution Day!

Please consider contributing something this international awareness day. Whether it’s a dollar, five dollars, a hundred dollars or a thousand please consider that giving provides an opportunity to show what we stand for and energizes those who give and those who receive. Don’t give more than you can – but please give what you can – and know that any amount helps. It will lift your day…(Click on a link to donate.)

• End ME/CFS Project – Now raising money to do intensive analyses of severely ill patients. Ultimate goal – $5 million dollars a year to conquer ME/CFS. Last seen – adding yet another Nobel Laureate (that’s three) to its Scientific Advisory Board
• Institute for Neuroimmune Medicine – Modeling ME/CFS to create treatment interventions. Last seen – creating targeted one-two-three treatment interventions for ME/CFS
• Invest in ME – getting at the heart of Rituximab and ME/CFS;  raising funds for a Rituximab Trial. Last seen – doing intensive analyses of B-cells to produce best Rituximab study ever.
• National Center for Neuroimmunology and Emerging Diseases – NCNED – Australian ME/CFS Group engaged in cutting-edge immune research. Last seen publishing a hot ion channel cell study in ME/CFS – two days ago…
• Simmaron Research Foundation – Redefining ME/CFS through spinal fluid, NK cell and other neuro-immune research. Last seen – redefining ME/CFS with Ian Lipkin using spinal fluid analyses.
• Solve ME/CFS Initiative – adept at bringing in new faces to study ME/CFS; last seen – getting its epigenetics researcher a fat new grant to continue his research.
• Stanford ME/CFS Initiative – currently engaged in the largest immune study ever in ME/CFS. Last seen – publishing a brain imaging study that may produce a biomarker.