Reprinted with the kind permission of Cort Johnson and HealthRising.org.
The similarities are striking: the symptoms, the shoddy research funding, the poor treatment from doctors, the gender imbalance and the stigma both still face. Both diseases still really exist on the fringes of medicine and medical research.
Yet one disease is moving forward rapidly and the other is not – and it’s probably not the one you think.
That disease has a great name.. That disease has three FDA drugs approved for it, a specialty it fits in (however awkwardly) and a home at the National Institutes of Health (NIH). The other disease has a putrid name, has no FDA drugs approved (and none in the pipeline), no specialty associated with it, no home at the NIH, and its community has a (mostly undeserved) reputation for being hard to deal with.
In almost every way, FM appears to have a leg up. With its much higher prevalence, it clearly has more financial and social resources potentially available to it. It has the attention of the drug companies, which have produced several phase II or III drug trials over the past couple of years. Plus, it’s embedded within a field (pain) that’s getting a lot more attention.
When it comes to numbers, there’s no contest: fibromyalgia affects ten million people in the U.S. and has a massive Facebook presence, while ME/CFS affects about a million and isn’t close on Facebook.
- Fibromyalgia by ProHealth – 455K
- FM Awareness – 255K
- Fibromyalgia – New Life Outlook – 231K
- Living with FM – 158K
- Fibromyalgia Inspiration – 45K.
Compare that to the one million people in the U.S. with chronic fatigue syndrome (ME/CFS).
Chronic Fatigue Syndrome (ME/CFS)
- Chronic Fatigue Syndrome and ME by ProHealth – 118K
- Open Medicine Foundation – 37K
- Solve ME/CFS – 34K
- ME Action – 16K
- Chronic Fatigue Syndrome/Fibromyalgia is Treatable – 8K.
Yet the divide between the two diseases is growing – and not on the FM side. There’s no question that ME/CFS, formerly known as the “yuppie” disease, with its rep for having a difficult-to-deal-with community, is pulling away. It’s making strides at the federal level, in the research arena, in advocacy – even in the media. While ME/CFS is far behind the 8-ball with regards to treatment, there’s an energy, and commitment to improve its lot, that doesn’t seem to be present in FM.
Plus, while ME/CFS research is trending in the right direction – towards more pathophysiology – FM research appears to be going in the opposite direction, towards a more behavioral/psychological interpretation of the disease.
In an article titled “Fibromyalgia Researchers, It’s Time to Stop Watching the Flowers Grow!”, Donna Gregory Burch recently reacted with understandable dismay to a study assessing the effects of a “flower design” course on the pain in fibromyalgia. Mind/body interventions can be helpful with chronic pain, but when researchers can get funding for a study on the effects of flowering arranging on FM something has gone very wrong, indeed. Donna ended:
“The truth is that too many FM studies are similar and there’s too little an emphasis on understanding the biological causes of the disease. The increasing emphasis on mind/body elements in FM is surprising given the increasing interest in physiologically understanding chronic pain.”
She is so right. The HEAL Initiative is pouring hundreds of millions of dollars into understanding and developing new treatment options for chronic pain, yet there’s no evidence any of its funding is going to fibromyalgia – which has been described as the quintessential pain disorder.
The recent Quest newsletter produced by the National ME/FM Action Network in Canada noted that a new emphasis on pain research there has largely bypassed FM as well. Since, of all the pain diseases, the pain found in FM is not associated with an injury to a specific tissue, the disease provides a superb opportunity to observe pain sensitization in its purest form; yet it doesn’t appear to be happening.
NIH-projected funding for fibromyalgia and ME/CFS in 2020 is $12 and $13 million. That works out to just over $1 per FM patient per year and $13 per ME/CFS patient per year. Four years ago, ME/CFS was receiving $8 million and FM $11 million. Since then, ME/CFS funding has grown 50% while FM funding has grown less than 10%.
Research isn’t the only area FM has lost ground. A look at activities on every level (research, federal, advocacy, treatment) reveals a large disparity between ME/CFS and FM-initiated efforts.
It hasn’t been easy and for many years one wondered if the work to get the feds involved made any difference at all, but things have started to change for ME/CFS at the federal level. Structural components (particularly CFSAC) were laid down early in the disease which ended up making a major difference (via the production of the IOM/P2P reports). Over time, the ME/CFS community has produced:
- Three NIH-funded ME/CFS Research Centers
- One five-year NIH intramural study
- Five year funding for Canadian ME/CFS research network that will collaborate with NIH-funded U.S. Center
- A year long project to have the NIH create a strategic plan
- Long term CDC effort on ME/CFS
- Institute of Medicine Report (now National Academies of Sciences)
- Pathways to Prevention Report
- Common Data Elements project to standardize research protocols in ME/CFS
- Federal Advisory Committee For ME/CFS (CFSAC for @15 years)
- Special Emphasis Grant Panel for ME/CFS grant applications.
Private/Public/Non-Profit Research Efforts
Small but vital independent research efforts have at times made a major difference. The focus on exercise may not have existed without Solve ME’s backing of Workwell Foundation. Similarly, Jarred Younger’s big NIH grants were seeded by pilot studies. Over the past year, the Open Medicine Foundation has opened two new ME/CFS research centers at Harvard and in Sweden.
- The Open Medicine Foundation (Stanford/Harvard/Uppsala)
- Solve ME Initiative
- Institute of Neuroimmune Medicine (Nancy Klimas)
- Bateman Horne Center
- Invest in ME
- Euromene – European Consortium focused on ME/CFS.
Treatment and Education Efforts
- Clinicians Consortium (Bateman Horne Center)
- CDC Website renovation
- Workwell Medbridge Project
- Pandora’s Continuing Medical Education (CME) Course
- Stanford commitment to improved ME/CFS clinic integrated with Ron Davis’s research
- New York State ME/CFS Declaration.
- Biobanks – Solve ME/UK (NIH-funded)/ Canada – coming
- International Patient registry – coming soon (Solve ME)
- Stanford (and soon Harvard) Open Data Base for Researchers
- Fatigue Journal (IACFS/ME).
- NIH-Sponsored International Conference (2019)
- IACFS/ME Biannual International Research Conferences
- Invest in ME Annual International Research Conferences
- Open Medicine Foundation-sponsored Stanford Working Group
- Solve ME Research Colloquium (dating back decades)
- Invest in ME Research Colloquium.
- Full-time professional patient advocate for ME/CFS (Solve ME)
- ME Action – devoted to ME Advocacy
- Part-time advocate (David Tuller) supported by ME/CFS Community
- Continuing broad efforts to overturn PACE trial
- Connection with NOW and other organizations.
- Unrest / Forgotten Plague documentaries
- Jen Brea TED Talk
- ME/CFS Alert – Llewellyn King ongoing video interviews.
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Not being as immersed in the FM field I may have missed some effort.
- I was unable to find any FM organizations currently funding research.
- International Congress on Controversies in Fibromyalgia – a several day conference
- Fibromyalgia Awareness Conference (the 19th!) – 1/2 day conference.
- I was unable to find any federal efforts specifically focused on fibromyalgia.
- A film called Invisible was reportedly under production.
- Fibromyalgia Advocacy Day hosted by the International Support Fibromyalgia Network … is today and tomorrow – and advocates have flown into DC to ask for more FM-specific funding
- Other advocacy efforts may be occurring but I was unable to find them.
Rather alarmingly, a look at recent FM research citations suggests, as Donna proposed, that the trend overall in the FM research field is towards more and more mind/body research and less pathophysiology.
The last 20 fibromyalgia and ME/CFS research citations in PubMed (where each disease was mentioned in the title) reveal an astonishing split. Fibromyalgia research was dominated by mind/body/psychological efforts while efforts to understand the pathophysiology were uppermost in ME/CFS.
- Tai Chi
- Heart rate variability biofeedback
- Social support, anxiety, depression and severity of pain
- Goal preferences, affect, activity patterns
- Power of flower arranging course
- Walking as exercise
- FM and obesity
- Obesity, smoking and socioeconomic status
- Sexual desire
- Positive affect intervention
- Physical factors – quality of life
- Mindfulness and acceptance-based interventions for FM
- Flexibility exercise training.
- Disease impact
- Diagnostic criteria.
- Neuropathic pain syndrome
- Pro-inflammatory cytokines
- Brain network hub stimulation
- Immune factor effect.
Chronic Fatigue Syndrome
- Recovering – Intra-active process
- Management of ME/CFS
- Relationship satisfaction, communication
- Factors associated with work status.
- Novel Therapeutic Interventions.
Epidemiological and Clinical
- Promis Fatigue Short Form
- Symptom Assessment
- Documenting Disability in ME/CFS
- Short Form DePaul Questionnaire.
- Antibodies to Herpesviruses
- Inflammatory Proteins
- Cytokine Review
- ME/CFS Comprehensive Review
- Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test
- Nosology of Causation
- IDO Metabolic Trap Hypothesis
- Machine Learning Diagnosis
- Pathological Mechanisms
- Biological Basis of ME/CFS
- Biomarker Test.
It’s true that ME/CFS has a long, long way to go – in some areas such as treatment, a much longer way to go than FM. The number of NIH grant applications for ME/CFS research, for instance, remain abysmally low and ME/CFS- knowledgeable doctors are exceedingly rare. FM does have one more big thing going for it – it has the numbers. With approximately ten times as many people affected and better name recognition than ME/CFS, the FM community has the potential to far outstrip the ME/CFS community in garnering federal and other resources.
With its active federal presence, its research foundations, its federally funded research centers, its strategic work on the federal level, the focus on pathophysiology, and its active media presence, there’s a sense that ME/CFS is moving forward.
One question is why the ME/CFS field seems to have captured so much more energy and unleashed so much more creativity.
The early creation of an organization of research professional (IACFS/ME), the regular international conferences, a professional advocacy and research organization (Solve ME), all helped set a tone. The publication of Osler’s Web surely galvanized many. While FM organizations appear to have largely given up on funding research, Solve ME has been able to maintain a research focus for 30 years.
The field was later boosted by Jen Brea’s efforts to create ME Action, her film (Unrest), Solve ME’s return to advocacy, and the entry of Ron Davis in conjunction with the emergence of the Open Medicine Foundation. Davis’s effectiveness as an effective researcher/spokesperson for ME/CFS has helped bring many dollars into the field including a one-time $5 million dollar donation. The harsh environment in the UK triggered aggressive and organized advocacy and research efforts by Invest in ME, MERUK and others.
FM advocates can look to some of the thing that have worked for ME/CFS.
- Efforts to work within the NIH to create federally funded reports that highlighted the needs in ME/CFS
- Private non-profits such as Solve ME, which made research a priority early on, and funded many pilot efforts which took seed in ME/CFS
- An early focus on advocacy – although it appeared for many years to have little effect – has reaped dividends in the last five years
- For all its weaknesses, the federal committee on ME/CFS (CFSAC) did provide a place for experts, advocates and NIH officials to establish relationships and work together.
- Bold actions have paid off: Jen Brea had never created a film (Unrest) before or an advocacy organization (MEAction). Linda Tanenbaum had never lead a research foundation (OMF) – both have been very successful.
Fibromyalgia, on the other hand, has three FDA-approved drugs and the interest of pharmaceutical companies – two things the ME/CFS community is missing.
FM advocates can take heart in the immense possibilities present before them. With about ten million affected, the FM community has the numbers to move the NIH and get more and better research, get better doctor training and better treatments.
It can view the ME/CFS community’s progress with hope. Who, after all, would have expected little ME/CFS, with its weird name and dodgy reputation, to have the ear of the NIH Director or to rebound from its worst funding period ever with three research centers and a large intramural study? If ME/CFS can do that, FM can do far more.
It would be a good thing if it did. Both diseases need each other to thrive.
About the Author: ProHealth is pleased to share information from Cort Johnson. Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.