Category: Advocacy

To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!

Abstract:

My daughter has been diagnosed with a range of chronic conditions, including Hyper-mobile Ehlers-Danlos Syndrome and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I have approached my role as caregiver in the same way I approach my day job leading social science research: reading the literature, carefully observing her condition, and developing hypotheses about her conditions and how they might be treated. I now have more than 7 years of longitudinal observation-a wealth of data-but no easy way to share with the medical research community the hypotheses these observations have engendered and my ideas about how to productively structure future research to accelerate progress toward treatments for her and others like her. In this essay, I share my thoughts on why patient and caregiver observations and hypotheses are important and how the medical research field might tap into them to make faster progress toward effective treatments for complex medical conditions.

Source: Lubell J. To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice! Ann Fam Med. 2025 Nov 24;23(6):570-572. doi: 10.1370/afm.240494. PMID: 41285594. https://www.annfammed.org/content/23/6/570 (Full text)

Ignorance about post-exertional malaise and continued conflation of ME/CFS with chronic fatigue harms patients and stymies research progress

Dear Editor,

There are numerous issues with the opinion piece by Miller and coauthors. Most concern longstanding fallacies about the nature of ME/CFS and what patients believe about their illness, which — again — need to be corrected. I’d like to focus on just one: The defining and cardinal feature of ME/CFS is not fatigue, but rather post-exertional malaise (PEM).

PEM, sometimes referred to as post-exertional symptom exacerbation (PESE), can be defined as episodes during which people with ME/CFS experience significant worsening of existing symptoms and/or onset of new symptoms following amounts of physical or mental exertion or sensory stimuli that they could easily tolerate before the illness [1]. The length and severity of an episode of PEM are out of proportion to the amount of exertion or stimulus that triggered it; in severe or very severe ME/CFS patients, PEM may be triggered by, for example, short conversations with their carers or brief exposure to bright light, and these episodes may last week, months, or longer.

PEM remains poorly understood, but the concept and terminology have over recent years become much more mainstream, owing to the high prevalence of PEM in long covid [2]. The consensus opinion among ME/CFS patients is that daily activities and sensory input should be managed in such a way as to minimise PEM, because PEM severely impacts quality of life and can in some cases lead to further long-term deterioration in patients’ health and functional capacity. This concept forms the basis of pacing, an energy management strategy recommended by NICE [3].

In their opinion piece, Miller and coauthors ignore PEM when listing common symptoms of ME/CFS. This is an attempt to continue framing this illness as belonging to a family of ‘fatiguing conditions’, which, along with other ‘medically unexplained symptoms’, they argue can be treated with psychological interventions and rehabilitation.

Read the rest of this letter here: https://www.bmj.com/content/389/bmj.r977/rr-6

This Is CFS Art Launches Online Exhibit Showcasing Artists Living with CFS/ME

[Swansea, NSW, Australia] – [3 October] – This Is CFS Art is excited to announce the launch of its new website, thisiscfs.art, a unique online space dedicated to showcasing the incredible work of artists who live with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This online exhibit aims to highlight the resilience and creativity of these artists, offering a meaningful outlet for their voices and stories.

CFS/ME affects millions globally, yet they tend to feel invisible. The invisibility applies to both the range of symptoms that are usually not obvious for outsiders but can be very debilitating, and the fact that CFS/ME sufferers often ‘drop out’ of their life and become invisible to society. This Is CFS Art seeks to change that by providing a way to show what it means to live with CFS/ME in a variety artworks submitted by a range of artists.

“I am committed to amplifying the voices of artists who live with CFS/ME,” said Zoe Wright, Founder of This is CFS Art. “Through this platform, I hope to make visible both the disease itself and the people living with it. At the same time, this exhibit celebrates the resilience and creativity of these artists.”

Founder Zoe Wright lives with CFS/ME herself and has found art a helpful way to express the feelings and experiences of living with a chronic condition that is so little understood.

Visit thisiscfs.art today to explore the powerful artistic expressions of those living with CFS/ME. Artists living with the condition are invited to submit their own artwork through the website.

About CFS Art: CFS Art is dedicated to showcasing the work of contemporary artists who live with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Through this platform, CFS Art seeks to raise awareness of the condition and celebrate the incredible talent and creativity of those affected.

For more information, please visit thisiscfs.art

-Zoe Wright

Contact: Zoe Wright
Founder
www.thisiscfs.art

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

By George Monbiot

It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.

Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.

Read the full article in The Guardian HERE.

Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients

Abstract:

Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of researchers to date classify the disease as organic, many physicians still believe that ME/CFS is a psychosomatic illness.
In this article, we show how detrimental this belief is to the care and well-being of affected patients and, as a consequence, how important the education of physicians and the public is to stop misdiagnosis, mistreatment, and stigmatization on the grounds of incorrect psychosomatic attributions about the etiology and clinical course of ME/CFS.
Source: Thoma M, Froehlich L, Hattesohl DBR, Quante S, Jason LA, Scheibenbogen C. Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients. Medicina. 2024; 60(1):83. https://doi.org/10.3390/medicina60010083 https://www.mdpi.com/1648-9144/60/1/83 (Full text)

Contesting oppressive regimes of truth: A critical feminist re-examination of (bio)psychosocial hegemony in the field of myalgic encephalomyelitis / chronic fatigue syndrome

Abstract:

Myalgic encephalomyelitis / chronic fatigue syndrome, a disabling condition disproportionately affecting women, is predominantly clinically managed through a (bio)psychosocial lens with psychosocial-inspired therapies, criticised for facilitating social and epistemic injustice, psychological and physical harms. Whilst most literature contesting (bio)psychosocial practices espouses a mainstream scientific perspective, politics and power relations undergirding psychosocial hegemony are better explicated through a critical lens. This article re-examines the ascendancy of psychosocial therapies and related practices through a critical feminist psychology and Foucauldian lens, with a view to locating oppressive practices in their socio-political and cultural context and promoting dialogue on possibilities for positive social change.

Source: Hunt, J. E. (2023, August 10). Contesting oppressive regimes of truth: A critical feminist re-examination of (bio)psychosocial hegemony in the field of myalgic encephalomyelitis / chronic fatigue syndrome. https://doi.org/10.31235/osf.io/3g7kp https://osf.io/preprints/socarxiv/3g7kp/ (Full text)

Online Health Communities in Controversy over ME/CFS and Long Covid

Abstract:

The condition known variously as myalgic encephalomyelitis, chronic fatigue syndrome, or ME/CFS has been steeped in controversy for 40 years or more. Long Covid, first noticed and named in 2020, has become entangled with the ME/CFS controversy because of striking similarities in the experiences of patients suffering from the two illnesses. Online health communities (OHCs) have played central roles in both controversies, but these are not the kinds of roles that have been so well-documented in prior literature.

While prior research has established many ways in which participation in an OHC may benefit or otherwise affect community members themselves, this essay focuses on how OHCs contribute to positional shifts in health controversies that involve other communities as well. Using a framework for understanding health controversies as argumentative polylogues, I show that OHCs arguing with other players have made contributions that are both effective in gaining ground for the OHCs’ own goals and in elevating the overall quality of the debate. Further, in some cases these contributions have been so innovative as to suggest surprising future trajectories for OHCs.

Source: Jackson, S. (2023). Online Health Communities in Controversy over ME/CFS and Long Covid. European Journal of Health Communication, 4(2), 49–72. https://doi.org/10.47368/ejhc.2023.203 https://ejhc.org/article/view/3559/2989 (Full text)

Long covid: protesters outside the White House demand better care

Protesters took to the pavement outside the White House on 19 September to demand a better deal for people affected by long covid, complaining that the Biden administration’s plans fell short on action and funding.

“The pandemic is over,” President Joe Biden declared the night before in a pre-recorded interview which aired on the news magazine 60 Minutes. “We still have a problem with covid,” he said. “We’re still doing a lot of work on it but the pandemic is over. If you notice, no one’s wearing masks. Everybody seems to be in pretty good shape. And, so, I think it’s changing.”

But the scene outside the presidential mansion the next day belied that message. Wearing black masks and red shirts, protesters called for research, medical treatment, and social services for those with long covid. Around half would qualify for a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome. The protest was organised by #MEAction, an international network of patient advocates.

“I went undiagnosed for 15 years, because doctors are not educated about the condition,” Jennifer Nish told The BMJ. Nish, from Lubbock, Texas, said that she was inspired to help organise the protest to raise awareness. “I don’t want anyone to go through what I had to go through,” she said and called on “the White House to treat this like the emergency that it is.”

Read the rest of this article HERE.

Source: Roehr B. Long covid: protesters outside the White House demand better care BMJ 2022; 378 :o2266 doi:10.1136/bmj.o2266  https://www.bmj.com/content/378/bmj.o2266 (Full text)

Transcript: NIH ME/CFS Advocacy Call – March 28, 2022

Transcript:

Ms. Barbara McMakin: Good afternoon everyone and thank you for standing by. My name is Barbara McMakin and I’m from the NINDS Office of Neurosciece Communications and Engagement. On behalf of the NIH, I would like to welcome you to this afternoon’s call and to thank you for your interest in participating in this discussion with us today.

Today’s call is being recorded. If you have any objections please disconnect at this time. Dr. Vicky Whittemore, Program Director at NINDS, will introduce the speakers, each of whom will make some remarks, after which we will answer your questions. If you have a question for our speakers, we invite you to submit it through the Q and A box at the bottom of the Zoom screen. We will try to make our remarks brief so that we can answer as many questions as possible in the time available to us this afternoon.

I also wanted to mention that we are exploring different formats for these telebriefings going forward. For our next telebriefing we plan to include live oral questions during the question and answer session. That telebriefing has not yet been scheduled, but once we have those details we will send out a message to the listserv and post the call information on the ME/CFS website. Now, I would like to hand the call over to Dr. Whittemore.

Read the rest of this transcript HERE.

Community Advisory Committee Develops Priorities for ME/CFS Research

Press Release:

Posted by CII Coordinator, May 10, 2022

The Community Advisory Committee (CAC) for the NIH ME/CFS Research Network was established to bridge the gap between researchers and the ME/CFS community with the goal of accelerating the pace of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research. The CAC is a group of 15 individuals from various professional backgrounds, all of whom have lived experience of the disease.

The CAC Research Priorities working group has authored a report on the challenges and priorities to be addressed to achieve needed outcomes for people with ME/CFS. This has become especially urgent given the large number of people who already have, and are expected to develop, ME/CFS following COVID-19.

ME/CFS is a debilitating, chronic, complex disease that most often follows an infection and is associated with neurological, autonomic, immunological, and metabolic abnormalities. Patients experience a substantial impairment in functioning, and symptoms such as sleep dysfunction, cognitive impairment, orthostatic intolerance, pain, fatigue, and the hallmark post-exertional malaise (PEM), an exacerbation of symptoms following even small amounts of previously tolerated activity. An estimated 836,000 to 2.5 million Americans suffer from ME/CFS with a greater prevalence in females, adults and possibly people who are Black and Latinx. There are no validated biomarkers or FDA-approved treatments and patients can struggle to access adequate clinical care. An estimated 25% are homebound or bedbound and 75% are unable to work. Recovery is rare and patients can remain ill for decades.

Progress in understanding the etiology of ME/CFS and developing biomarkers and treatments has been constrained by a number of interrelated challenges, such as the inherent complexity and heterogeneity of the disease, inadequate study methods, challenges in collaborating across all stakeholders, misunderstanding about the nature of the disease, and lack of research funding and researchers in the field. But even with these challenges, substantial progress has been made in understanding some of the underlying pathology.

The pandemic has created the tragic opportunity to finally understand how an infection can result in chronic illness. At the same time, the knowledge and expertise gained from years of ME/CFS research has provided valuable insights for Long COVID research.

Leveraging this opportunity for ME/CFS requires ME/CFS-specific funding and a ME/CFS strategic research plan to expedite progress in ME/CFS diagnostics and treatments. It also requires the integration of learnings from ME/CFS research into the PASC strategy, not only to help accelerate research in Long COVID but to better understand ME/CFS onset, natural history, and pathology. A natural experiment is underway which cannot be replicated, and this calls for swift, decisive action before the window of opportunity to study early-onset ME/CFS closes as the pandemic resolves.

People with ME/CFS, including those who have developed ME/CFS following COVID-19, are waiting.

The CAC Research Priorities working group developed this comprehensive but concise report outlining the long-standing barriers that have constrained progress in ME/CFS and strategies for their resolution, as well as key short and longer term research priorities that need to be progressed to accelerate meaningful research and achieve outcomes for people with ME/CFS, including those whose ME/CFS developed following COVID-19. These recommendations can be used by researchers to generate new study designs and refine existing goals, facilitate collaborations between research domains and stakeholders, and by federal and private funders to guide award distribution and agenda setting.

Click here to download the CAC Research Priorities Report

The Research Priorities working group is available and eager to discuss the contents of this document with researchers. Please contact us at any time at: CAC.MECFS@gmail.com

The authors of this guide are: Mary Dimmock, Rochelle Joslyn (chair), Sabrina Poirier, Jaime Seltzer and CAC Director, Allison Kanas.

This work was supported by US Public Health Service grant 5U54AI138370 and 5U24NS105535. This content does not represent the official views of the National Institute of Neurological Disorders and Stroke or the National Institutes of Health.