Week beginning 26th September 2022
News, articles, advocacy
The Atlantic Long COVID Has Forced a Reckoning for One of Medicine's Most Neglected Diseases
Feature article by Ed Yong on ME as a medical crisis due to stigmatisation, lack of knowledge and few specialists. "While ME/CFS patients, their caregivers, and the few doctors who treat them have spent years fighting for medical legitimacy, the coronavirus pandemic has now forced the issue".
Article
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Reporting on long COVID and other complex chronic illness
Excellent Twitter thread by science journalist Ed Yong on having a patient-centred approach when reporting on complex illnesses, accommodating for people with post-exertional malaise, and more. "No one owes you their story; sharing one is an incredibly vulnerable thing to do, and must be honoured".
Twitter thread
here Thread
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Ed Yong reports on Twitter that after writing 55 in-depth articles on the pandemic, he is taking a break: 'Some personal news: I’m taking a 6-month sabbatical, starting now. These past 3 years have been the most professionally meaningful of my life, but they’ve also deeply broken me.'
Twitter
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The Atlantic In his final piece before going on sabbatical Yong reflects on the pandemic and the failures of the US response: "The Pandemic’s Legacy Is Already Clear - All of this will happen again."
Article
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Sweden Opinion piece by journalist Agnes Arpi about broken promises to ME patients from the region Västerbotten.
Article
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UK - Maeve Boothby O'Neill inquest
A pre inquest hearing this week heard from Maeve's mother Sarah Boothby about the lack of appropriate medical care for Maeve who had very severe ME/CFS and tragically passed away a year ago. The full inquest is expected to be held next March.
Devon Live: 'Exeter mum's heartbreak as daughter, 27, loses severe ME battle'
The Times: "Chronic Fatigue Syndrome patient told 'You're making it up'"
by Maeve's father, Times journalist Sean O'Neill.
Devon Live article
here Times article
here Thread
here (members only)
UK Action for ME AGM Annual general meeting video and report are available. Topics covered include AfME involvement in research with DecodeME and Breakthrough-ME, expansion of their Healthcare services, and appointment of new trustees.
Video
here (46 minutes) Report
here Thread
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Scotland #MEAction held a Millions Missing protest outside the Scottish Parliament. A report in Stroud news, headed "Belle and Sebastian singer: Living with ME makes me feel like a ‘non-person’" interviewed Stuart Murdoch. Some MSP's came out to talk to protesters.
Article
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Journal of The Royal New Zealand College of General Practitioners
"‘The Lightning Process’ and chronic fatigue syndrome/myalgic encephalomyelitis" by Rosamund Vallings
Vallings raises concern '...that recent GP educational events have promoted ‘The Lightning Process’...' for CFS/ME. She notes some recent biomedical findings by Australian and New Zealand researchers and warns against LP, citing UK ME Association and NICE warnings against its use.
Article
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Book review Forum member Trish has posted an Amazon review spelling out some of the many problems with a new book, 'Living with ME and Chronic Fatigue Syndrome', by Coakley and Knops, published as part of the Penguin Life Experts series.
Review
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Australia 2022 Parliamentary inquiry into Long Covid and repeated covid infections - submission deadline 18 Nov 2022
The terms of reference require responses to specific questions covering experiences of patients and of healthcare providers, research, and impacts on community and economic factors and the health system.
Details
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Psychology Today "Why So Many Doctors Doubt Patients With Long Covid"
Psychiatrist and psychotherapist Yochai Re'em on stigma and mistreatment of Long Covid patients from health care providers. He believes the reason behind poor care is the way "somatic symptoms disorders" have been taught.
Article
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Cardiovascular Endocrinology & Metabolism
"Response to the report published by the UK House of Commons All-Party Parliamentary Group on CFS/ME: implications for cardiometabolic risk" by Low et al.
The authors of this letter defend the used of a biopsychosocial model for treating ME/CFS, concluding with 'Any intervention that can result in greater activity levels is likely to reduce cardiovascular risk.'
Letter
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Coming events
UK - Sheffield ME and Fibromyalgia Group are hosting Chris Ponting who will talk about DecodeME, prior to their AGM, Oct 6, 2022, 2:00 PM
Details and register
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Crowdfunding
Trial By Error Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms"
New round of crowdfunding for David Tuller so his important work can continue. The aim is to raise $64,000 which will secure his position as senior fellow in public health and journalism at the Center for Global Health at The University of California, Berkeley from January to June 2023.
Crowdfunding
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Research news and commentary
UK DecodeME "DecodeME Questionnaire – Shining a light on the ME/CFS community"
A short article about the value of the questionnaire part of the research, with encourgement to spread the word, and some data so far on participants' location, age group and severity.
Participate
here Article
here Thread
here
USA The
NIH RECOVER Initiative project has released a Post-Infection Illness Expert List. From the document intro: "Investigators and clinicians with research expertise and clinical experience with post-infection syndromes, ME/CFS, and other illnesses are contributing within the RECOVER Initiative and participating in the Initiative’s oversight committees and working groups."
Document
here Thread
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The Scientist Multiple Possible Causes of Long COVID Come into Focus
On current hypotheses behind Long Covid. Includes an interview with Avindra Nath from NIH who says there could be multiple mechanisms ongoing and that "long COVID shares symptoms with some suspected autoimmune diseases, mainly ME/CFS.."
Article
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USA -
ScienceDirect has published a commentary on different forms of disability discrimination during the pandemic. The full title is: 'Ever-changing but always constant: “Waves” of disability discrimination during the COVID-19 pandemic in the United States'
Paper
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Psychology Today Will Covid Brain Fog Increase Risks for Alzheimer's Disease?
Professor of Psychology Ira Hyman says viral infections have been considered as possible causes for brain and cognitive declines, and that a new analysis found an increased risk of developing Alzheimer in the year following Covid among peopler older than 65. He concludes this is another reason to avoid Covid.
Article
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Research
Preprint
"Commentary: Graded Exercise Therapy and Cognitive Behaviour Therapy Do Not Improve Employment Outcomes in ME/CFS" by Tuller and Vink.
Starts with Wessely's 1989 article that proposed his CFS model of faulty beliefs and deconditioning, and the linking of welfare benefits to undergoing behavioural interventions. Sharpe is quoted claiming social factors including welfare benefits prevent recovery. '
Both State and private insurers pay people to remain ill.'
Tuller and Vink analyse research data from PACE and other studies to show that CBT and GET do not lead to increased employment. They conclude: 'In consequence, they should no longer be recommended to ME/CFS patients as a strategy for achieving occupational rehabilitation and related outcomes.'
Trial by Error article
here Preprint
here Thread
here
JAMA Network Open
“Association of SARS-CoV-2 Seropositivity With Myalgic Encephalomyelitis and/or Chronic Fatigue Syndrome Among Children and Adolescents in Germany” by Sorg et al.
This German study failed to find a strong relationship between SARS-CoV-2 IgG antibodies and ME/CFS symptoms in 634 pediatric hospital patients. Forum members have questioned their methodology as 30% of the control group also experienced ME/CFS symptoms.
Article
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Journal of Translational Medicine
“Long-term neuromuscular consequences of SARS-Cov-2 and their similarities with myalgic encephalomyelitis/chronic fatigue syndrome: results of the retrospective CoLGEM study” by Retornaz et al.
This French study compared 59 patients with long-COVID and 55 ME/CFS patients with a history of severe infection before the coronapandemic. The frequency of fatigue, myalgia, sleep problems, cognitive dysfunction, and post-exertional malaise was similar in the two groups.
Article
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Frontiers in Immunology
“Dysregulated autoantibodies targeting vaso- and immunoregulatory receptors in Post COVID Syndrome correlate with symptom severity” by Sotzny et al.
This German study by the research team of Carmen Scheibenbogen found lower natural regulatory autoantibody (AAB) levels in patients with Long Covid (half of which had ME/CFS) compared to controls.
Article
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The Lancet
“Plasma proteomic signature predicts who will get persistent symptoms following SARS-CoV-2 infection” by Captur et al.
The authors found that non-severe SARS-CoV-2 infection perturbs the plasma proteome for at least 6 weeks. They speculate that this may help to identify patients who are more likely to suffer from persistent symptoms related to SARS-CoV-2 infection.
Article
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Fatigue: Biomedicine, Health and Behavior
"Research priorities for ME/CFS: the results of a James Lind alliance priority setting exercise" by Tyson et al.
The researchers described the process and analysed data from the priority setting partnership last year in which over 1500 people with ME, carers and clinicians voted on their top ten priorities for ME/CFS research.
Paper
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Health Expectations
"Creative Long Covid: A qualitative exploration of the experience of Long Covid through the medium of creative narratives" by Marie Pearson et al
An attempt to gain insight of Long Covid based on creative submissions from 28 Long Covid sufferers. "In relation to clinical practice, the results suggest that adjustment reaction and loss of sense of self could be added as common symptoms".
Paper
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BMJ
"Early experiences of the Your COVID Recovery® digital programme for individuals with long COVID" by Lloyd-Evans et al
Early observational data concerning an online rehabilitation programme described as containing "interactive and downloadable resources on managing symptoms such as cough, fatigue, fear and anxiety and topics such as eating well, getting moving again and sleeping well". The results are based on questionnaires and pulmonary disease assessment test to 110 participants who have completed the program. The researchers thinks the results are promising.
Study
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