Progress is happening: an overview of positive developments in the ME/CFS community

Evelien and I recently made an overview of ongoing or planned clinical trials for ME/CFS. We concluded that there are few decent treatment trials for ME/CFS in the pipeline and that things seem to be moving much faster for other illnesses such as multiple sclerosis and schizophrenia.

Because some found our articles a bit depressing, we want to highlight a couple of positive developments in this new blog post. We believe that since 2015 significant progress is being made in the ME/CFS community and that advocates are achieving success worldwide. 

The United States taking the lead

Let’s start in the US. In 2017 Francis Collins declared that ME/CFS is “in need of a concerted effort by the scientific community to understand its biological basis.” Since then, the NIH funded three collaborative research centers for ME/CFS and more than doubled the amount for ME/CFS, from around 5 million dollars in the years 2008-2014 to approximately 15 million dollar in recent years. This is obviously still too low given the disease burden of ME/CFS, but it’s a first step in the right direction.

Together the NIH and CDC developed Common Data Elements to standardize ME/CFS research and last year the National Advisory Neurological Disorders and Stroke (NANDS) Council published a useful report on strategies to advance ME/CFS research. 

Meanwhile American nonprofits are making headway as well. The Open Medicine Foundation created several new ME/CFS centers including one at Harvard affiliated hospitals that involves plans for a center of excellence and a clinical trials network. Solve ME/CFS Initiative just launched the You + ME Registry and biobank, an ambitious project that will provide samples and data to any researcher interested in studying ME/CFS.

Funding for biomedical ME/CFS research

Other countries are making funds available for biomedical ME/CFS research as well. 

  • In Australia the Minister of Health has allocated 3 million (Australian) dollars for an NHMRC Targeted Call for Research to better understand the causes and improve the diagnosis of ME/CFS. Three successful applicants were recently announced and will study ion channel dysfunction, nitrogen metabolism and several ‘omics’  to unravel the pathophysiology of ME/CFS. In addition, the Australian Government provided grant funding to conduct a health economics study of the impacts and costs associated with ME/CFS. In June 2019, an advisory report was published by a committee of ME/CFS researchers and patient advocates advising the NHMRC on the current needs for research and clinical guidance for ME/CFS in Australia.
  • In Canada the federal government announced to invest 1.4 million (Canadian) dollars in biomedical research to improve the quality of life of people living with ME/CFS. The Interdisciplinary Canadian Collaborative ME Research Network, known as ICanCME, has been formed by researchers of the Universities of Montréal and Alberta.
  • In the Netherlands, the 2018 report by the Health Council marked a notable change. While the country long had some of the most prolific promoters of the psychosomatic view on ME/CFS, the report by the Health Council states that many doctors are failing ME/CFS patients by assuming a psychogenic cause. The council highlights the need for more biomedical research. This resulted in an ambitious ME/CFS research proposal with a budget of 20 to 29,5 million euros for a period of ten years. Although it remains unclear if this proposal will be adopted, it has been reported to the ministry of health. 
  • In the UK, the largest study on ME/CFS ever, Decode ME, recently started thanks to 3.2 million pounds of government funding, awarded jointly by the Medical Research Council and National Institute for Health Research. Decode ME hopes to recruit 20.000 persons with ME/CFS to conduct a genome-wide analysis. 
  • In Germany, the Federal Ministry of Education and Research (BMBF) and the Federal Ministry of Health (BMG) recently announced new initiatives for ME/CFS. The BMG will commission the Institute for Quality and Efficiency in Health Care (IQWIG) to process and publish the current state of knowledge on ME/CFS in the form of a scientific report. The BMBF announced a call for study proposals on unknown pathomechanisms of individual diseases with high disease burden and insufficient treatment options. On social media the BMBF mentioned that this offers new opportunities to fund ME/CFS research.

These examples show that progress is possible and that ME/CFS advocacy can make a real difference. In another blog post in this series, we will make the case why this is a crucial time to get involved in advocacy for ME/CFS.

GET/CBT no longer seen as effective treatments

At the same time the cognitive behavioral model – which regards ME/CFS as the result of unhelpful behavior and ineffective thoughts – is slowly but steadily declining. Based on this model, clinical guidelines and scientific reviews used to recommend graded exercise therapy (GET) and cognitive behavior  therapy (CBT). Both treatments were generally regarded as effective for ME/CFS even though patients strongly objected against their use and some reported to have been harmed by them.

Since 2015, multiple methodological flaws in studies on GET and CBT have been raised. There has been a surge of criticism which led to a change in how both treatments are viewed. The most notable example is the website of the CDC. While the agency used to recommend GET and CBT, it now states that “while vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines.” Instead the CDC advises activity management or pacing to address post-exertional malaise.

In Belgium, the Health Council made a similar change of course. While it strongly recommended GET in previous reports, In 2020 it states to no longer support its use because of (translated from Dutch): “questionable effectiveness and the risk of possible harmful effects”. In 2018 the Health Council in the Netherlands already stated that it sees no reason to recommend GET.  

In 2014 the Agency for Health Research and Quality (AHRQ) in the US published an influential report on the diagnosis and treatment of ME/CFS. Two years later it added an addendum to clarify that there is insufficient evidence on GET and CBT for patients who meet internationally accepted case definitions of ME/CFS. Large healthcare institutions in the US, such as Kaiser Permanente, have subsequently changed course. 

In the UK, The National Institute for Health and Care Excellence (NICE) recommended GET and CBT in 2007 but in 2018 it decided to revise its guideline, in large part due to concerns expressed by patients regarding these treatments. Another example is Cochrane. Its review on exercise therapy for CFS has been equally influential as controversial. Following several perspicuous critiques, Cochrane announced to amend the review and announce a full update (a process that is currently underway).

It is now common practice for general reviews on ME/CFS (examples here, here and here) to mention some of the criticism and limitations of GET and CBT-studies and describe ME/CFS as a debilitating condition in need of more effective treatments. The most recent systematic review on randomized controlled trials for ME/CFS highlights that “contrary to the positive outcomes in the 1990s and 2000s, more recent CBT trials have failed to show consistent benefits” and that there was “no definitely effective intervention with coherence and reproducibility.” Instead of recommending GET or CBT to treat patients’ unhelpful thoughts and behavior, the review states that further exploration of the pathophysiology of ME/CFS and better development of other treatments are needed.

Although the myth that exercise therapy can treat or cure ME/CFS remains present, these examples show that significant progress has been made in recent years to debunk this misconception.

The psychosomatic view on ME/CFS seems to be getting less popular

Another notable change is that more reviews and guidelines clarify that ME/CFS is not a psychological illness, as has been claimed in the past. One recent Polish review for example, clarifies that “ME/CFS is a multiorgan disease of somatic origin, and not, as initially thought, psychological.” A prominent viewpoint in JAMA states that “over the past 35 years, thousands of studies from laboratories in many countries have documented underlying biological abnormalities involving many organ systems in patients with ME/CFS, compared with healthy controls: in short, there is something wrong.” On its website the CDC now informs healthcare providers that “ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems.” Similarly, a CME learning module organized by Medscape, for which MOC education points could be earned by healthcare providers, writes that “although the etiology and pathophysiology of ME/CFS are unclear, the illness is biological, not psychogenic.” Both the reports of the Dutch and Belgian Health Council recommend a shift on research from psychosocial to biomedical research. 

The hardcore psychosomatic view on ME/CFS is getting less common and seems to have moved to research on Medically Unpexlained Symptoms (MUS) and related labels. 

COVID-19 as a silver lining

The positive developments listed above were in a large part due to the advocacy work of many. Another major change in the ME/CFS community occurred totally unexpectedly. 

While ME/CFS patients watched with agony how the new coronavirus causes new suffers with lasting symptoms, the pandemic also led to new recognition of ME/CFS. Articles in the Atlantic, JAMA, Nature, New Scientist, Time Magazine, CNN and Washington Post made a connection between Long Covid and ME/CFS. It has been a long time since ME/CFS appeared so prominently in respectable and mainstream news outlets. Hopefully, the increased attention will also result in more research funding and involvement of new scientists with fresh ideas, willing to study the illness. Every cloud has a silver lining. 

Conclusion

Although the state of ME/CFS research remains dire, there are some hopeful signs that things are improving. In our view, significant progress has been made over the last 5 years, in large part due to the hard work of advocates all around the world. We hope that this overview encourages optimism and a willingness to be part of the change. Hopefully, this blog post can act as a tool for advocacy in countries where progress for ME/CFS patients has stalled, as a demonstration that more can and should be done.

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