Category: Advocacy

Exploring invisibility and epistemic injustice in Long Covid-A citizen science qualitative analysis of patient stories from an online Covid community

Abstract:

Background: In 2020, the long-lasting effects of the Covid-19 virus were not included in public messages of risks to public health. Long Covid emerged as a novel and enigmatic illness with a serious and life-changing impact. Long Covid is poorly explained by objective medical tests, leading to widespread disbelief and stigma associated with the condition. The aim of this organic research is to explore the physical and epistemic challenges of living with Long Covid.

Methods: Unlike any previous pandemic in history, online Covid communities and ‘citizen science’ have played a leading role in advancing our understanding of Long Covid. As patient-led research of this grassroots Covid community, a team approach to thematic analysis was undertaken of 66 patient stories submitted online to covid19-recovery.org at the beginning of the Covid-19 pandemic between April and September 2020.

Results: The overriding theme of the analysis highlights the complexities and challenges of living with Long Covid. Our distinct themes were identified: the life-changing impact of the condition, the importance of validation and how, for many, seeking alternatives was felt to be their only option.

Conclusions: Long Covid does not easily fit into the dominant evidence-based practice and the biomedical model of health, which rely on objective indicators of the disease process. Patient testimonies are vital to understanding and treating Long Covid, yet patients are frequently disbelieved, and their testimonies are not taken seriously leading to stigma and epistemic injustice, which introduces a lack of trust into the therapeutic relationship.

Patient contribution: The research was undertaken in partnership with our consumer representative(s) and all findings and subsequent recommendations have been coproduced.

Source: Ireson J, Taylor A, Richardson E, Greenfield B, Jones G. Exploring invisibility and epistemic injustice in Long Covid-A citizen science qualitative analysis of patient stories from an online Covid community. Health Expect. 2022 May 12. doi: 10.1111/hex.13518. Epub ahead of print. PMID: 35557480. https://onlinelibrary.wiley.com/doi/10.1111/hex.13518 (Full text)

MAY 12th: International ME/CFS And FM Awareness Day

May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS). May 12th was the birthday of Florence Nightingale, who was believed to have suffered from ME/CFS.

The aims on this day are to increase public awareness of the disease, educate the public, and lobby for more research into the causes and cure for ME/CFS and other Chronic Immunological and Neurological Diseases. Local, regional, and national organizations typically schedule events during the week of May 12, as well as the weeks just prior and after.

How to participate:

Wear Blue

Add a blue or purple ribbon to your FB page

If you have a Twitter account, post something about ME/CFS

Write a letter to the editor using the #MillionsMissing toolkit.

Here is Why Letter to the Editors are Important:
1. You can reach a large audience.
2. Great way to start a conversation around an issue that is important to you.
3. Helpful way to educate and spread awareness about ME.
4. Letters to the Editors are often monitored by elected officials.
5. Letters to the Editors are a great way to catch the attention of
journalists at the newspaper who may write a full article.
As part of the World ME Alliance WAMES is inviting you to use our new custom poster maker ahead of World ME Day on the 12th of May. Create your own poster alongside thousands of others this World ME Day. There are loads of templates for you to choose from See them HERE.

You can also participate in a number of events:

What can the world #LearnFromME? – This May 12th, the World ME Alliance is launching the first World ME Day, and we’re asking “what can the world #LearnFromME? “We want to use this World ME Day to share the realities of living with this disease, to reach out the health professionals and to bring organisations and individuals together, all calling for the world to #LearnFromME. Take part in our film! Send us a short video of yourself (15 seconds), describing something you have learnt from ME. We’ll join these together into one campaign video, to reach others and show the massive knowledge this community has, and the necessity of learning from ME.”

#MILLIONSMISSING GLOBAL VIRTUAL EVENT – Join ME community members and change makers for this event. The event will be an opportunity for our community to gather to experience the stories of those with ME, gain insight from doctors and researchers, connect with those living with Long COVID, and be galvanized to change the narrative and continue the fight for the #MillionsMissing. RSVP HERE>>

See the Millions Missing website for more ways to participate.

Solve ME Advocacy Month –  Advocacy Month is an opportunity to share the policy solutions vital to address the growing number of people suffering from ME/CFS and Long Covid. This year Solve ME is focusing on two main requests of the House and Senate chambers of Congress: Please co-sponsor the TREAT Long Covid Act (HR 7482), and Please co-sponsor the COVID-19 Long Haulers Act (HR 2754).  See Solve’s full roster of events HERE.

May Momentum launches on May 1st! Every Tuesday during May, OMF will be sharing new, exclusive video interviews with Directors of the OMF Collaborative Research Centers (CRC)s. Videos will be uploaded to YouTube, their website, and shared via e-newsletter every Tuesday in May. These recordings will remain available to watch at your convenience.

Be sure to check the May 12 Facebook page for announcements of ongoing events.

Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS

Abstract:

This article examines the contestation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Lacking consistent diagnostic definitions, agreed-on biological indicators, or approved treatments, ME/CFS is an incompletely medicalized condition. It is defined by intractable and debilitating exhaustion after any form of exertion. Through an ethnographic exploration of an American ME/CFS patient activist group, I develop the concept of “recursive debility.” Symptoms form the very basis for disease activist groupings in the absence of biomarkers, but they also present a significant barrier to traditional forms of activism. Ironically, then, debilitation blocks the means through which debilitation might end. Patients contest systems of knowledge but always in bodies that experience exhaustion without end. This article presents a disability studies intervention in suggesting that the recursivity of debility demonstrates the profound interdependence of the bodily aspects of impairment and the sociopolitical aspects of disability.

Source: Rogers EL. Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS. Med Anthropol Q. 2022 Mar 8. doi: 10.1111/maq.12701. Epub ahead of print. PMID: 35262958. https://pubmed.ncbi.nlm.nih.gov/35262958/

Sign for MECFS!

In Germany, there is virtually no medical care for ME/CFS patients and to date there is no government funding for biomedical scientific research into this devastating disease. With 50,000 signatories before the end of the deadline, we will even be granted a public hearing in the German Bundestag. This would be our best chance to finally draw attention to the issue of ME/CFS in German federal politics. Sign the petition! It will only take a few minutes and can be done online. Anyone can sign, worldwide! Read more here>>

ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE

Letter:

Rapid Response:

Patient reports of harm from GET cannot be ignored

Dear Editor

Professor Trudie Chalder from King’s College Hospital states that:

“The NICE guidelines for CFS/ME are at odds with the research evidence. Researchers from different institutions in different countries have found graded exercise therapy and cognitive behaviour therapy to be effective for some patients with CFS.

Evidence has shown they reduce fatigue and improve functioning without harm, if delivered by trained therapists in specialist clinics. Being a clinician and researcher in this field, I can’t help but think clinicians will be confused by this message from a respected organisation.”

Having carefully reviewed all the very extensive evidence on efficacy and safety for graded exercise therapy (GET) from relevant clinical trials, medical experts and from people with ME/CFS, the NICE guideline committee concluded that in addition to there being no sound evidence for efficacy for GET there was also consistent patient evidence of harm, sometimes serious and persisting, occurring.

Read the rest of this letter HERE. 

Source: Charles Shepherd. BMJ 2021; 375 doi: https://doi.org/10.1136/bmj.n2643 (Published 29 October 2021) BMJ 2021;375:n2643

Response to Adamson et al. (2020): ‘Cognitive behavioural therapy for chronic fatigue and chronic fatigue syndrome: Outcomes from a specialist clinic in the UK’

Abstract:

In a paper published in the Journal of the Royal Society of Medicine, Adamson et al. (2020) interpret data as showing that cognitive behavioural therapy leads to improvement in patients with chronic fatigue syndrome and chronic fatigue. Their research is undermined by several methodological limitations, including: (a) sampling ambiguity; (b) weak measurement; (c) survivor bias; (d) missing data and (e) lack of a control group. Unacknowledged sample attrition renders statements in the published Abstract misleading with regard to points of fact. That the paper was approved by peer reviewers and editors illustrates how non-rigorous editorial processes contribute to systematic publication bias.

Source: Hughes BM, Tuller D. Response to Adamson et al. (2020): ‘Cognitive behavioural therapy for chronic fatigue and chronic fatigue syndrome: Outcomes from a specialist clinic in the UK’. J Health Psychol. 2021 Apr 10:13591053211008203. doi: 10.1177/13591053211008203. Epub ahead of print. PMID: 33840241. https://pubmed.ncbi.nlm.nih.gov/33840241/

Long COVID Advocates Join Together To Form Alliance To Make Policy Recommendations, Secure Research Funding, And Transform Understanding Of Post-Viral Illnesses

Press Release:

LOS ANGELES, Feb. 25, 2021 /PRNewswire/ — Today, leaders of 50 organizations and patient groups announced the formation of the Long COVID Alliance. The Alliance includes a network of patient-advocates, scientists, public health and disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policymakers and accelerate research that will address the challenges faced by ‘COVID long haulers’ and related post-viral illnesses.

Their goal is to transform the current understanding of Long COVID and related post-infectious illnesses such as:  myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD) and mast cell activation syndrome (MCAS), autoimmune diseases and other related illnesses.

“The Long COVID Alliance is a critical collaboration based on the current reality that doctors and researchers are reporting that millions of COVID-19 patients continue to experience chronic and often debilitating post-viral symptoms. This state of extended illness is presently labeled Long COVID,” said Oved Amitay, Solve M.E. President and Chief Executive Officer, one of the three Alliance founders. “Even though tests might reveal that no virus remains in the body, COVID-19 ‘long haulers’ continue to struggle, often alone. Our community brings past experiences that are relevant to the current crisis.”

In 2020, this same group came together to successfully call for urgent government investments for Long COVID, and $1.15 billion for long-term COVID-19 research at the National Institutes of Health shortly followed. The effort laid the foundation for the new Long COVID Alliance, which will prioritize:

  • Health equity and confronting systemic bias and racism in the Long COVID response;
  • Facilitating data harmonization (i.e., combine data from different sources and provide users with a comparable view of data from different studies);
  • Deploying financial resources from the NIH to create a public-private post-viral research infrastructure and translate research results into treatments and cures for millions;
  • Providing expert guidance and resources to media and policymakers;
  • Expanding public-private partnerships;
  • Leveraging existing post-viral disease knowledge and infrastructure;
  • Connecting policymakers with patients and scientists; and
  • Ensuring meaningful patient participation.

“So many patients have bonded together as the healthcare community has not understood why some patients are asymptomatic and others are suffering moderate to debilitating issues a year later,” said Hunter Howard, chairman of the Global Pandemic Coalition, a founder of the Alliance. “As one of the first infected in Texas, and a healthcare executive, I immediately noticed doctor friends did not understand my lingering symptoms or the novel coronavirus.  We started the Global Pandemic Coalition to bring together private companies to support the public sector pandemic initiatives.  If the vaccines continue to drive down mortalities, nothing may be more important now than coming together to drive understanding and fund research for the COVID survivors.”

To accompany the Long COVID Alliance’s launch, the initial partners from 2020 have drafted key recommendations and guidance for the National Institutes of Health (NIH), which can be found by visiting https://longcovidalliance.org/wp-content/uploads/2021/02/NIH-Long-COVID-Alliance-NIH-Recommendations-Letter-Final-with-signers.pdf

Current Long COVID Alliance partners include:

  • Action for M.E.
  • American Medical Women’s Association (AMWA)
  • Bateman Horne Center
  • Body Politic
  • Covid-19 Longhauler Advocacy Project
  • Dysautonomia International
  • ENIGMA COVID-19 Working Group
  • Florida Society of Neurology
  • HADASSAH
  • Health Rising
  • Healthy Women
  • Institute for Neuro-Immune Medicine (INIM)
  • Kantor Neurology, LLC
  • Long COVID Physio
  • Massachusetts ME/CFS & FM
  • #MEACTION
  • ME International
  • Medical Partnership 4 MS+
  • Minnesota ME/CFS Alliance
  • National Association for Nurse Practitioners in Women’s Health
  • National Health Council
  • National Organization for Women (NOW)
  • Nurse Practitioners in Women’s Health (NPWH)
  • Open Medicine Foundation
  • PandoraORG
  • PolyBio Research Foundation
  • Pulmonary Wellness Foundation
  • Sex and Gender Health Collaboration
  • Simmaron Research
  • Solve M.E.
  • The American Dysautonomia Institute (ADI)
  • The Mast Cell Disease Society, Inc.
  • The SHANE Foundation
  • Utah COVID-19 Long Hauler
  • Whittemore Peterson Institute
  • YOU + ME Registry (Solve M.E.)

“Many long haulers are now approaching a full year post-infection. We have lost jobs, lost significant quality of life, and lost pieces of who we once were. It’s been a long road with an uncertain future and we’ve finally found hope,” said Karyn Bishof, Founder of the COVID-19 Longhauler Advocacy Project and of the Long COVID Alliance. “With the help of our partners, we will ensure that Long haulers are not left out in the cold. The Long COVID Alliance will fight with us for awareness, answers, and ensuring that patient voices are included at every step of solving this ‘second wave’ Long COVID health crisis.”

To learn more, join the Long COVID Alliance, or become a signatory to the NIH letter, visit: www.longcovidalliance.org.

About Solve M.E.
The Solve ME/CFS Initiative (Solve M.E.) is the leading, national non-profit organization solely dedicated to solving ME/CFS. We are committed to making ME/CFS understood, diagnosable, and treatable. Solve M.E. is the largest U.S. provider of private competitive research funding exclusively for ME/CFS working to accelerate the discovery of safe and effective treatments; we strive for an aggressive expansion of funding for research that will lead to a cure, and seek to engage the entire ME/CFS community.

Media Inquiries Only 
Contact Emily Taylor
Director of Advocacy and Communications
714-296-1661
ETaylor@solvecfs.org

Chronic Disease Stakeholders Join SOLVE M.E. in Push for Federally Funded Research into Long COVID

Press Release: LOS ANGELES, Dec. 4, 2020 /PRNewswire/ — Twenty leading chronic disease stakeholders joined the Solve ME/CFS Initiative (Solve M.E.) in authoring a powerful letter urging Congress to fund millions of dollars in new National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) research into the post-viral health complications for long-term COVID-19 (Long COVID) survivors. To view a copy of the letter, click here.

With more than 13.9 million coronavirus infections in the U.S., the letter emphasizes the importance of research into chronic conditions known to be associated with viral triggers, such as: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Dysautonomia, Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS), among others. Authors of the letter include: Solve ME/CFS Initiative, National Health Council, National Organization for Women, #MEAction, Open Medicine Foundation, Dysautonomia International, The Mast Cell Disease Society, Body Politic, COVID-19 Longhauler Advocacy Project, Hadassah, American Medical Women’s Association, Nurse Practitioners in Women’s Health, HealthyWomen, Bateman-Horne Center, Institute for Neuro-immune Medicine, Pandora.Org, Sex and Gender Health Collaborative, Minnesota ME/CFS Alliance, The Shane Foundation, Massachusetts ME/CFS & FM Association, & The American Dysautonomia Institute.

Letter serves as a warning about the increasing number of COVID-19 patients experiencing post-viral complications.

“Preliminary evidence suggests that nearly five million Americans will experience Long COVID regardless of infection severity, which will likely result in a post-viral chronic fatigue crisis,” said Oved Amitay, CEO of Solve M.E. “Solve M.E. and our stakeholder allies call on Congress to act now to support new NIH and CDC funding for research into the health needs of this rapidly growing patient population.”

The letter cites warnings from leading public health officials — including Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases — about the estimated 3.2 million Americans that could be temporarily or permanently disabled by Long COVID symptoms. Indeed, studies show that 66 percent of patients with post-viral acute respiratory distress syndrome report experiencing severe fatigue after 12 months, consistent with Dr. Fauci’s analysis that Long COVID symptoms are “highly suggestive” of ME/CFS. These alarming statistics underscore the urgent need for funding, research, diagnostics, and treatment into Long COVID.

Chronic disease experts unanimously agree that in order to adequately address Long COVID complications, Congress must act immediately and appropriate the following funds:

$110 million for the establishment of Long COVID Collaborative Research Centers and Centers of Excellence;
$60 million toward expanding post-viral disease research;
$3.5 million for the development and issuance of medical guidance about Long COVID to medical providers and front-line health professionals; and
$300,000 toward convening experts and stakeholders to establish data harmonization.

“We strongly encourage these funds be allocated to the NIH and CDC by way of the congressional appropriations process or a future COVID-19 relief package so this critically important research can begin immediately,” said Amitay.

About Solve ME/CFS Initiative

Solve M.E. is the leading, national non-profit organization solely dedicated to solving ME/CFS. We are committed to making ME/CFS understood, diagnosable, and treatable. Solve M.E. works to accelerate the discovery of safe and effective treatments and strives for an aggressive expansion of funding for research that will lead to a cure.

To learn more, visit our website at www.solveCFS.org

Media Inquiries Only Contact
Emily Taylor
Director of Advocacy and Communications
714-296-1661
ETaylor@solvecfs.org

AMMES Stands Against Racism

The American ME and CFS Society wishes to make it clear that we unequivocally stand against racism in all its forms. Violence against black people is a long-standing blot upon our society, but it has now reached a crisis point. The recent murder of George Floyd has generated massive protests across the United States and around the world, but there are countless other black men and women whose senseless murders remain hidden from view. This assault against the black community must end. AMMES stands firmly behind Black Lives Matter and all other organizations which fight for justice and civil rights.

Racism is endemic in the United States. It is built into every facet of our society, from law enforcement to health care. In every manner, way, shape and form, black people have suffered the consequences of systemic racism. Violence against black people is not only manifested in assaults and murder, but in the enforced poverty imposed upon black communities and in a justice system that singles out black people for punishment, simply for the color of their skin.

People with ME/CFS may not be able to join the millions of people who are protesting in the streets, but we can express our support. If you have the money, you can donate to organizations such as the NAACP Legal Fund and the ACLU. You can contact your legislators at the state and national level and demand that police departments be held accountable. You can write letters to the editor, and post your support for Black Lives Matter on social media. There are additional actions you can take HERE.

Please join AMMES in supporting those who are seeking to eradicate racism.  Join us in saying ENOUGH!

 

Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Abstract:

Miranda Fricker’s influential concept of epistemic injustice (Oxford University Press, Oxford, 2007) has recently seen application to many areas of interest, with an increasing body of healthcare research using the concept of epistemic injustice in order to develop both general frameworks and accounts of specific medical conditions and patient groups. This paper illuminates tensions that arise between taking steps to protect against committing epistemic injustice in healthcare, and taking steps to understand the complexity of one’s predicament and treat it accordingly. Work on epistemic injustice is therefore at risk of obfuscating legitimate and potentially fruitful inquiry.

This paper uses Chronic Fatigue Syndrome/Myalgic Encephalomyelitis as a case study, but I suggest that the key problems identified could apply to other cases within healthcare, such as those classed as Medically Unexplained Illnesses, Functional Neurological Disorders and Psychiatric Disorders. Future work on epistemic injustice in healthcare must recognise and attend to this tension to protect against unsatisfactory attempts to correct epistemic injustice.

Source: Byrne EA. Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Med Health Care Philos. 2020 Mar 13. doi: 10.1007/s11019-020-09945-4. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/32170570