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News in Brief - May 2021
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Week beginning 3rd May 2021
News, articles and videos
Solve M.E. The Solve ME/CFS Chronicle Spring 2021 is out. Headlines: Monumental wins for ME/CFS, Solve M.E and The Long COVID Alliance partner for 2021 Advocacy Week, A milestone for The You+ME Registry, An excerpt from the new book by ME/CFS community member Jamison Hill, Your COVID-19 vaccine questions answered.
Chronicle here Thread here
UK - NICE ME/CFS guideline The reason given to stakeholders for the 5 month delay in publication of the final version was given briefly as the large number of submissions. In reply a Freedom of Information request by Dom Salisbury, the additional explanation was given that some of the research papers had to be reassessed to ensure GRADE was applied correctly. Action for ME has also written to NICE to ask for more explanation.
Action for ME here Thread with further links here
Doctors with ME This new organisation founded by Dr Hng (Robin Brown) hopes to launch worldwide on ME Awareness Day. She is joined as directors by Keith Geraghty and Nina Muirhead.
Thread with Facebook links here
USA - NIH ME/CFS Advocacy Call March 30,2021
Transcript of this advocacy call is now available. Participants were Dr. Walter Koroshetz, Dr. Avi Nath, Dr. Joseph Breen, Dr. Vicky Whittemore.
Transcript here Thread here
Finland Critical article about a clinic for functional disorders recommending commercial alternative therapies to patients with ME and Long Covid. Among the interviewed are Prof. Jonas Bergquist who is sceptical of this approach.
Article here Thread here
Illustrator Interrupted I caught a virus an never recovered - part three
A thorough article by Amanda Francey with important background information for why and how ME became such a neglected disease and the importance of avoiding Long Covid patients suffering the same fate.
Article here Thread here
Malta
The ME, CFS and Fibromyalgia Alliance of Malta has launched a social media awareness-raising challenge, in which they’re asking people to post photos of themselves holding up homemade banners urging the government to recognize fibromyalgia and ME sufferers as disabilities.
Article here Thread here
..........
Biomedical news and research
Journal of Translational Medicine
"Deconditioning does not explain orthostatic intolerance in ME/CFS" by VanCampen et al.
This study of 199 ME/CFS patients and 22 healthy controls 'shows that in ME/CFS patients orthostatic intolerance is not caused by deconditioning as defined on cardiopulmonary exercise testing. An abnormal high decline in cerebral blood flow during orthostatic stress was present in all ME/CFS patients regardless of their %peak VO2 results on cardiopulmonary exercise testing'.
Paper here Thread here
Frontiers in Medicine - Infectious Diseases
Theory: Treatments for Prolonged ICU Patients May Provide New Therapeutic Avenues for ME/CFS - Stanculescu, Bergquist et al
The authors review and draw parallels between treatment trials for both patient groups, including 'the correction of suppressed endocrine axes, and/or inflammation, O&NS, and/or low thyroid hormone function'. They suggest similarities warrant collaboration between researchers.
Article here Thread here
..........
Other research and commentary
New York University Center for Disability Studies
Emily Lim Rogers is a PhD candidate at New York University who is currently working on his dissertation: “Clinical Proximities: Chronic Fatigue Syndrome and the Remaking of Disease in the US,” an archival and ethnographic examination of the politics of ME/CFS in the United States.
Article here Thread here
HRB Open Research
“Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study” By Cullinan et al.
The authors undertook three semi-structured focus groups, which together included 15 ME/CFS patients and 6 informal carers, to consider costs related to ME/CFS in Ireland.
Article here Thread here
Scientific Reports
“How peptic ulcer disease could potentially lead to the lifelong, debilitating effects of chronic fatigue syndrome: an insight” by Kuo et al.
This study used a Taiwanese Insurance Database. A retrospective analysis indicated that the incidence of CFS was higher in persons with peptic ulcer disease than in controls.
Article here Thread here
Cochrane
Caroline Struthers, Senior Equator Research Fellow at Oxford University, has published the response she received from Committee on Publication Ethics (COPE) concerning her complaint about the Cochrane reviews on GET and CBT for ME/CFS.
Thread here
Trial by Error by David Tuller My Letters to Psychosomatics Journal About Prof. White's Misleading GETSET Paper
Correspondence between Tuller and editor-in-chief of the Journal of Psychosomatic Research concerning their publication of a one-year follow-up of the GETSET trial where a null result was presented as "sustained improvement".
Article here Thread here
Musculoskeletal Care
“Pacing does help you get your life back”: The acceptability of a newly developed activity pacing framework for chronic pain/fatigue by Antcliff et al.
The authors conducted interviews with 12 patients with chronic pain or fatigue and five clinicians to explore the acceptability of their activity pacing framework.
Article here Thread here
..........
ME Awareness May 2021
ME/CFS patient and research organisations worldwide are organising online events and activities to mark ME Awareness Day and #MillionsMissing on 12th May, and throughout May. See their websites and the forum thread for more details. Some are listed below.
Thread here
#MEAction UK and Scotland 12th May
A day of interviews shown online on Facebook, including researchers, health professionals, authors, MPs, people with ME and carers.
Thread with details here
#MEAction USA #MillionsMissing Global Event. 12th May 12 - 2pm PDT
'This virtual 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 by galvanized to continue the fight for #MillionsMissing.'
Details here Thread here
UK DecodeME May Awareness activities include an article "From DNA to drug development. Five success stories show the potential of DecodeME" written to be accessible for non-scientists, and social media activities to promote the study and encourage people to sign up.
Article here Thread here
DecodeME is looking for people active on social media to become social media ambassadors to help spread the word and encourage people in the UK to participate. They are also inviting UK ME/CFS support groups to sign up to receive updates and they will be holding talks or webinars for groups.
Thread with details here and here
Norway Professor Karl Johan Tronstad will give a lecture on energy metabolism at a webinar organised by the Norwegian ME Association 12. May at 13.00. Language: Norwegian.
Registration here Thread here
...........
Survey
Workwell Foundation A short survey invites questions patients would like to see covered in their educational materials and webinars.
Thread with details here
.............
Fundraising
Solve M.E. "Donate to the Solve M.E. Double your money challenge!"
"All gifts made to Solve M.E. from now until June 30th will be matched up to $250,000-doubling your impact".
Website here Thread here
............
Covid-19 and ME
JOSPT "Humility and Acceptance: Working Within Our Limits With Long COVID and ME/CFS" by Décary et al
This important editorial which was published last week on ME, Long Covid and PEM now has open access. "The history of ME/CFS with exercise is one of false hope. More than 3 decades of trying exercise in this population can be summed up in one sentence: exercise can be harmful, sometimes life threatening, and should be avoided"
Paper here Thread here
Fatigue: Biomedicine, Health & Behavior
"COVID-19 symptoms over time: comparing long-haulers to ME/CFS" by Jason et al.
The authors assessed the symptoms of 278 long-haulers COVID-19 patients over time and compared these results to those obtained from 502 ME/CFS patients. Over time, the long-haulers reported an overall reduction of most symptoms including unrefreshing sleep and post-exertional malaise, but an intensification of neurocognitive symptoms.
Article here Thread here
UK ME Association "Long Covid & ME/CFS: Information & Management" by Dr Charles Shepherd. This free online 39 page document has been updated. It includes sections on diagnosis, and advice on management for those with PEM focused on convalescence, rest and pacing.
MEA article here Document pdf here Thread here
France
On May 7, Millions Missing France was invited to a video call with the French health minister, Olivier Véran, along with three other long Covid patient associations. The meeting discussed the diagnosis of, care pathways for, and funding for research on long Covid.
Announcement here Thread here
Cambridge Independent ME battle 'must not be repeated with long Covid', says chair of Cambridge support group
A great interview with Dr. Mark Harper, ME-sufferer and chair of the Cambridge ME Support Group. He provides background information on the problems of graded exercise as treatment approach to ME, and warns against the same mistake being repeated in treatment of Long Covid.
Article here Thread here
CTV News Some COVID-19 long-haulers are developing a 'devastating' syndrome
About Long Covid patients now starting to receive ME/CFS diagnosis. Prof. Alain Moreau says it's an exacerbating event and Dr. Lucinda Bateman says awareness about ME/CFS will help health care providers to recognise symptoms earlier and thus avoid doing too much in the early stages.
Article here Thread here
RTÉ The similarities between long Covid and chronic fatigue syndrome
Dr. John Cullinan is first author on a study from a patient-academic collaborative research project about the economic impact of ME in Ireland (see item above). In this article he writes about ME, key findings of their study and Long Covid.
Article here Thread here
The Science Bit Time to flatten the curve of shoddy COVID scholarship
Professor Brian Hughes warns against cutting corners when publishing papers and news stories about Covid. He refers among other to some examples concerning Long Covid and ME.
Article here Thread here
American Association of Critical Care Nurses
"Post-COVID-19 Syndrome: Theoretical Basis, Identification, and Management" by Scordo et al.
Suggests that some biomedical research on ME/CFS may help with understanding some Post Covid-19 symptoms. However it also recommends exercise based rehabilitation for fatigue.
Article here Thread here
Other items of interest
Medical News Today Long COVID and children: The unseen casualties of COVID-19
Article here Thread here
News-Medical.Net Most long COVID-19 sequelae affect people under 65, finds study
Article here Thread here
...........
S4ME social media: Facebook, Twitter and You Tube
News, articles and videos
Solve M.E. The Solve ME/CFS Chronicle Spring 2021 is out. Headlines: Monumental wins for ME/CFS, Solve M.E and The Long COVID Alliance partner for 2021 Advocacy Week, A milestone for The You+ME Registry, An excerpt from the new book by ME/CFS community member Jamison Hill, Your COVID-19 vaccine questions answered.
Chronicle here Thread here
UK - NICE ME/CFS guideline The reason given to stakeholders for the 5 month delay in publication of the final version was given briefly as the large number of submissions. In reply a Freedom of Information request by Dom Salisbury, the additional explanation was given that some of the research papers had to be reassessed to ensure GRADE was applied correctly. Action for ME has also written to NICE to ask for more explanation.
Action for ME here Thread with further links here
Doctors with ME This new organisation founded by Dr Hng (Robin Brown) hopes to launch worldwide on ME Awareness Day. She is joined as directors by Keith Geraghty and Nina Muirhead.
Thread with Facebook links here
USA - NIH ME/CFS Advocacy Call March 30,2021
Transcript of this advocacy call is now available. Participants were Dr. Walter Koroshetz, Dr. Avi Nath, Dr. Joseph Breen, Dr. Vicky Whittemore.
Transcript here Thread here
Finland Critical article about a clinic for functional disorders recommending commercial alternative therapies to patients with ME and Long Covid. Among the interviewed are Prof. Jonas Bergquist who is sceptical of this approach.
Article here Thread here
Illustrator Interrupted I caught a virus an never recovered - part three
A thorough article by Amanda Francey with important background information for why and how ME became such a neglected disease and the importance of avoiding Long Covid patients suffering the same fate.
Article here Thread here
Malta
The ME, CFS and Fibromyalgia Alliance of Malta has launched a social media awareness-raising challenge, in which they’re asking people to post photos of themselves holding up homemade banners urging the government to recognize fibromyalgia and ME sufferers as disabilities.
Article here Thread here
..........
Biomedical news and research
Journal of Translational Medicine
"Deconditioning does not explain orthostatic intolerance in ME/CFS" by VanCampen et al.
This study of 199 ME/CFS patients and 22 healthy controls 'shows that in ME/CFS patients orthostatic intolerance is not caused by deconditioning as defined on cardiopulmonary exercise testing. An abnormal high decline in cerebral blood flow during orthostatic stress was present in all ME/CFS patients regardless of their %peak VO2 results on cardiopulmonary exercise testing'.
Paper here Thread here
Frontiers in Medicine - Infectious Diseases
Theory: Treatments for Prolonged ICU Patients May Provide New Therapeutic Avenues for ME/CFS - Stanculescu, Bergquist et al
The authors review and draw parallels between treatment trials for both patient groups, including 'the correction of suppressed endocrine axes, and/or inflammation, O&NS, and/or low thyroid hormone function'. They suggest similarities warrant collaboration between researchers.
Article here Thread here
..........
Other research and commentary
New York University Center for Disability Studies
Emily Lim Rogers is a PhD candidate at New York University who is currently working on his dissertation: “Clinical Proximities: Chronic Fatigue Syndrome and the Remaking of Disease in the US,” an archival and ethnographic examination of the politics of ME/CFS in the United States.
Article here Thread here
HRB Open Research
“Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study” By Cullinan et al.
The authors undertook three semi-structured focus groups, which together included 15 ME/CFS patients and 6 informal carers, to consider costs related to ME/CFS in Ireland.
Article here Thread here
Scientific Reports
“How peptic ulcer disease could potentially lead to the lifelong, debilitating effects of chronic fatigue syndrome: an insight” by Kuo et al.
This study used a Taiwanese Insurance Database. A retrospective analysis indicated that the incidence of CFS was higher in persons with peptic ulcer disease than in controls.
Article here Thread here
Cochrane
Caroline Struthers, Senior Equator Research Fellow at Oxford University, has published the response she received from Committee on Publication Ethics (COPE) concerning her complaint about the Cochrane reviews on GET and CBT for ME/CFS.
Thread here
Trial by Error by David Tuller My Letters to Psychosomatics Journal About Prof. White's Misleading GETSET Paper
Correspondence between Tuller and editor-in-chief of the Journal of Psychosomatic Research concerning their publication of a one-year follow-up of the GETSET trial where a null result was presented as "sustained improvement".
Article here Thread here
Musculoskeletal Care
“Pacing does help you get your life back”: The acceptability of a newly developed activity pacing framework for chronic pain/fatigue by Antcliff et al.
The authors conducted interviews with 12 patients with chronic pain or fatigue and five clinicians to explore the acceptability of their activity pacing framework.
Article here Thread here
..........
ME Awareness May 2021
ME/CFS patient and research organisations worldwide are organising online events and activities to mark ME Awareness Day and #MillionsMissing on 12th May, and throughout May. See their websites and the forum thread for more details. Some are listed below.
Thread here
#MEAction UK and Scotland 12th May
A day of interviews shown online on Facebook, including researchers, health professionals, authors, MPs, people with ME and carers.
Thread with details here
#MEAction USA #MillionsMissing Global Event. 12th May 12 - 2pm PDT
'This virtual 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 by galvanized to continue the fight for #MillionsMissing.'
Details here Thread here
UK DecodeME May Awareness activities include an article "From DNA to drug development. Five success stories show the potential of DecodeME" written to be accessible for non-scientists, and social media activities to promote the study and encourage people to sign up.
Article here Thread here
DecodeME is looking for people active on social media to become social media ambassadors to help spread the word and encourage people in the UK to participate. They are also inviting UK ME/CFS support groups to sign up to receive updates and they will be holding talks or webinars for groups.
Thread with details here and here
Norway Professor Karl Johan Tronstad will give a lecture on energy metabolism at a webinar organised by the Norwegian ME Association 12. May at 13.00. Language: Norwegian.
Registration here Thread here
...........
Survey
Workwell Foundation A short survey invites questions patients would like to see covered in their educational materials and webinars.
Thread with details here
.............
Fundraising
Solve M.E. "Donate to the Solve M.E. Double your money challenge!"
"All gifts made to Solve M.E. from now until June 30th will be matched up to $250,000-doubling your impact".
Website here Thread here
............
Covid-19 and ME
JOSPT "Humility and Acceptance: Working Within Our Limits With Long COVID and ME/CFS" by Décary et al
This important editorial which was published last week on ME, Long Covid and PEM now has open access. "The history of ME/CFS with exercise is one of false hope. More than 3 decades of trying exercise in this population can be summed up in one sentence: exercise can be harmful, sometimes life threatening, and should be avoided"
Paper here Thread here
Fatigue: Biomedicine, Health & Behavior
"COVID-19 symptoms over time: comparing long-haulers to ME/CFS" by Jason et al.
The authors assessed the symptoms of 278 long-haulers COVID-19 patients over time and compared these results to those obtained from 502 ME/CFS patients. Over time, the long-haulers reported an overall reduction of most symptoms including unrefreshing sleep and post-exertional malaise, but an intensification of neurocognitive symptoms.
Article here Thread here
UK ME Association "Long Covid & ME/CFS: Information & Management" by Dr Charles Shepherd. This free online 39 page document has been updated. It includes sections on diagnosis, and advice on management for those with PEM focused on convalescence, rest and pacing.
MEA article here Document pdf here Thread here
France
On May 7, Millions Missing France was invited to a video call with the French health minister, Olivier Véran, along with three other long Covid patient associations. The meeting discussed the diagnosis of, care pathways for, and funding for research on long Covid.
Announcement here Thread here
Cambridge Independent ME battle 'must not be repeated with long Covid', says chair of Cambridge support group
A great interview with Dr. Mark Harper, ME-sufferer and chair of the Cambridge ME Support Group. He provides background information on the problems of graded exercise as treatment approach to ME, and warns against the same mistake being repeated in treatment of Long Covid.
Article here Thread here
CTV News Some COVID-19 long-haulers are developing a 'devastating' syndrome
About Long Covid patients now starting to receive ME/CFS diagnosis. Prof. Alain Moreau says it's an exacerbating event and Dr. Lucinda Bateman says awareness about ME/CFS will help health care providers to recognise symptoms earlier and thus avoid doing too much in the early stages.
Article here Thread here
RTÉ The similarities between long Covid and chronic fatigue syndrome
Dr. John Cullinan is first author on a study from a patient-academic collaborative research project about the economic impact of ME in Ireland (see item above). In this article he writes about ME, key findings of their study and Long Covid.
Article here Thread here
The Science Bit Time to flatten the curve of shoddy COVID scholarship
Professor Brian Hughes warns against cutting corners when publishing papers and news stories about Covid. He refers among other to some examples concerning Long Covid and ME.
Article here Thread here
American Association of Critical Care Nurses
"Post-COVID-19 Syndrome: Theoretical Basis, Identification, and Management" by Scordo et al.
Suggests that some biomedical research on ME/CFS may help with understanding some Post Covid-19 symptoms. However it also recommends exercise based rehabilitation for fatigue.
Article here Thread here
Other items of interest
Medical News Today Long COVID and children: The unseen casualties of COVID-19
Article here Thread here
News-Medical.Net Most long COVID-19 sequelae affect people under 65, finds study
Article here Thread here
...........
S4ME social media: Facebook, Twitter and You Tube
Week beginning 10th May 2021
News and advocacy action
CDC The Systematic Review Report for Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Centers for Disease Control and Prevention (USA) is requesting comments for their systematic review draft report for Diagnosis and Treatment of ME/CFS. The report covers themes including criteria, evaluation of study quality and systematic review results. "The report, once finalised, is intended to support the anticipated development of future clinical practice guidelines, which would guide physicians in managing and providing care for patients with ME/CFS". The document is scheduled to be published on May 17h 2021 and comments must be submitted within 90 days.
More information here Thread here
CDC ME/CFS Healthcare Provider Toolkit
A recent update on CDC's page about ME/CFS consists of 6 informative handouts for healthcare providers about ME assessment and managing symptoms.
Handouts here Thread here
Europe
The European ME Alliance (EMEA) is conducting a pan-European survey, comparing the situation and experiences of ME-patients across European countries. The aim is to receive several hundred respondents from each of the EMEA member countries, and a total number of respondents of minimum 10,000.
Article here Thread here
Canada Petition to the Government of Canada
Petition initiated by Andrea Martell. It's asking for $50 Million Dollars for biomedical research, a commission to the Chief Statistician of Canada to study the economic impact for ME/CFS and to set aside funding to rapidly accelerate a diagnostic test.
Petition here Thread here
Denmark A medical newspaper reports that a politician from the opposition is threatening to initiate a motion of no confidence to the Minister of Health if he doesn't follow up the Parliament's decision from 2019 of removing ME from functional disorders.
Article here (Danish) Thread here
UK Rochdale Online: Gifts to make severe ME sufferers smile posted in Merryn Croft's memory by Smile for ME charity
"Alice Wright, a friend of Merryn’s who set up Smiles for ME in 2012 after herself being diagnosed with ME, said: “Merryn loved sending little gifts and also loved it when happy post arrived for her so we are glad to be able to do this in her memory."
Article here Thread here
South Africa Capetalk: Do you think you have Chronic Fatigue Syndrome? Here's what you need to do
"Pippa Hudson talks to Cape Town medical doctor Elizabeth Murray, who specialises in the management of post-viral fatigue syndromes". Duration: 15 minutes.
Radio interview here Thread here
Norway New ME book with interviews and portraits of patients, carers and researchers is published. Made by authors Jørgen Jelstad, Morten Borgersen and photographer Fin Serck-Hanssen.
Thread with info here
..............
Research, surveys, job vacancy and commentary
Stanford University Postdoc position
"The Steinmetz lab is looking for a talented postdoc to join our collaborative project with the labs of Ron Davis and Mark Davis to investigate the role of T cells and the immune system in ME/CFS"
More information here Thread here
The Chronic Illness Survey Adventure (Symptoms Cluster Characterization in Complex Chronic Disease)
The survey will "probe more deeply into ME/CFS, long COVID, POTS, hEDS, and MCAS". It is a cooperation between Patient-Led Research Collaborative, #MEAction, Columbia University Mailman School of Public Health, Open Medicine Foundation, The Jackson Laboratory and The University of Edinburgh (MRC).
More information here Thread here
Healthcare
"Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" by Maksoud et al.
This Australian team has conducted a systematic review to determine whether there are clinical characteristics of sleep in ME/CFS patients compared to healthy controls using objective measures such as polysomnography and multiple sleep latency testing. The authors conclude that many of the measurements were inconsistent across the studies and that better designed research is need.
Article here Thread here
COPE
The Committee on Publication Ethics (COPE) responded to Caroline Struthers’s concerned about how Cochrane handled two of its reviews on ME/CFS. It states: “we consider that the journal followed an adequate process and gave the concerns you raised due consideration.”
Response and Thread here
CBTwatch
On the blog CBTwatch, an anonymous therapist involved in Improving Access to Psychological Therapies (IAPT) testifies: “I’m finding an increasing amount of the people I see have chronic physical health conditions [..] I have had people tell me their symptoms were dismissed for years as being “all in their head”, and I worry I am inadvertently feeding into that damaging narrative.”
Article here Thread here
..............
ME Awareness May 2021
CDC dedicated a page for the ME/CFS International Awareness Day here
StudyPRN provided free access to their ME/CFS CPD module for the ME Awareness Week here
Austria Greeting from the Minister of Health Wolfgang Mückstein here
Cornell Center for Enervating Neuroimmune Disease Dr. Maureen Hanson provides a Pecha Kucha for ME/CFS here
The Norwegian ME Association allocated money to 4 research projects
Article here (Norwegian) Thread with summary here
Hungary Article about ME including an interview with Ágnes Szarvas in the women's magazine nlc.
Article here (Hungarian) Thread with summary here
Times of Malta Manoel Island lit up to raise awareness about three illnesses. Article here
Independent.ie Living with ME: 'My world has become so small. Constantly managing chronic pain and dealing with brain fog and memory loss is my normal'. Article here
Germany Article in Der Tagesspiegel here Berliner Kurier here ZDF here and here WDR here
UK - Radio Gloucester Interview with Chantelle Parry (from 1.17 min) here
MillionsMissing and MEAction
The ME Action Network Videos
"What is DecodeME? What it will do and how you can take part" - Features Chris Ponting and patients and carers working on the project here
"Cutting edge ME researchers share their research with the #MillionsMissing - #MEAction UK" - with Drs. Bhupesh Prusty, Ronald W Davis and Janet Defoe, and Prof. Sara Tyson here
"How to turn your MP into an ally with Fleur Anderson MP, Alex Chalk MP and Carol Monaghan MP" here
"Medical Education with Dr Nina Muirhead and midwife Hayley Valentine-Howard" here
"Behind the scenes at the James Lind Alliance Priority Setting Partnership" here
"Speaking from the heart with Ron Davis, Janet Dafoe and Linda Neale" here
"Award winning authors talk to #MEAction UK about living and writing with ME" here
"Behind the scenes with #MillionsMissing organisers" here
#MEAction Press release about #MillionsMissing here
Norway Digital awareness campaign here
On the Wight MEAction appeals for governments to respond to ever-growing crisis. Article here
................
Coming events
Irish ME/CFS Association
Webinar May 25th with Dr. John Cullinan and Orla Ní Chomrai about the recently published paper "Understanding the Economic Impact of ME/CFS". Free registration at events@irishmecfs.org
Thread here
Sweden 27th May there will be an open hearing in the Parliament about ME/CFS and infection triggered fatigue syndrome.
More information here Thread here
Norway May 18th Asgeir Lande will be defending his thesis titled "Human leukocyte antigen associations in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and immune modulating treatment."
More information here Thread here
................
Covid-19 and ME
Trial By Error by David Tuller "Journal Editorial Calls for Caution in Exercise-Based Rehab Programs for Long COVID"
Commends the editorial in JOSPT "Humility and Acceptance: Working Within Our Limits With Long COVID and ME/CFS" reported here last week. Tuller interviewed the lead author, Décary, who said he was 'traumatised' by what he read about the PACE trial, and, after consulting patients, produced this editorial to warn against the rapid implementation of unevidenced GET for Long Covid patients with post exertional malaise.
Article here Thread here
U.S. News In Long COVID, Advocates Battling Chronic Fatigue Syndrome See Allies, Hope
A thorough and up-to-date article providing a good overview. "The two conditions have some striking similarities, feeling hopes that research can uncover solutions for both".
Article here Thread here
More items of interest
Svenska Dagbladet Article from Sweden about Long Covid in UK. Includes an interview with ME/CFS specialist dr. David Strain who says it's like CFS, and that treatments lack due to little research.
Article here (paywalled) Thread here
CBC Alberta physiotherapists inundated with long-haul COVID patients
Article and audio segment here Thread here
Bateman Horne Center Long Hauler Message to the ME/CFS & FM Community here
................
S4ME social media: Facebook, Twitter and You Tube
News and advocacy action
CDC The Systematic Review Report for Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Centers for Disease Control and Prevention (USA) is requesting comments for their systematic review draft report for Diagnosis and Treatment of ME/CFS. The report covers themes including criteria, evaluation of study quality and systematic review results. "The report, once finalised, is intended to support the anticipated development of future clinical practice guidelines, which would guide physicians in managing and providing care for patients with ME/CFS". The document is scheduled to be published on May 17h 2021 and comments must be submitted within 90 days.
More information here Thread here
CDC ME/CFS Healthcare Provider Toolkit
A recent update on CDC's page about ME/CFS consists of 6 informative handouts for healthcare providers about ME assessment and managing symptoms.
Handouts here Thread here
Europe
The European ME Alliance (EMEA) is conducting a pan-European survey, comparing the situation and experiences of ME-patients across European countries. The aim is to receive several hundred respondents from each of the EMEA member countries, and a total number of respondents of minimum 10,000.
Article here Thread here
Canada Petition to the Government of Canada
Petition initiated by Andrea Martell. It's asking for $50 Million Dollars for biomedical research, a commission to the Chief Statistician of Canada to study the economic impact for ME/CFS and to set aside funding to rapidly accelerate a diagnostic test.
Petition here Thread here
Denmark A medical newspaper reports that a politician from the opposition is threatening to initiate a motion of no confidence to the Minister of Health if he doesn't follow up the Parliament's decision from 2019 of removing ME from functional disorders.
Article here (Danish) Thread here
UK Rochdale Online: Gifts to make severe ME sufferers smile posted in Merryn Croft's memory by Smile for ME charity
"Alice Wright, a friend of Merryn’s who set up Smiles for ME in 2012 after herself being diagnosed with ME, said: “Merryn loved sending little gifts and also loved it when happy post arrived for her so we are glad to be able to do this in her memory."
Article here Thread here
South Africa Capetalk: Do you think you have Chronic Fatigue Syndrome? Here's what you need to do
"Pippa Hudson talks to Cape Town medical doctor Elizabeth Murray, who specialises in the management of post-viral fatigue syndromes". Duration: 15 minutes.
Radio interview here Thread here
Norway New ME book with interviews and portraits of patients, carers and researchers is published. Made by authors Jørgen Jelstad, Morten Borgersen and photographer Fin Serck-Hanssen.
Thread with info here
..............
Research, surveys, job vacancy and commentary
Stanford University Postdoc position
"The Steinmetz lab is looking for a talented postdoc to join our collaborative project with the labs of Ron Davis and Mark Davis to investigate the role of T cells and the immune system in ME/CFS"
More information here Thread here
The Chronic Illness Survey Adventure (Symptoms Cluster Characterization in Complex Chronic Disease)
The survey will "probe more deeply into ME/CFS, long COVID, POTS, hEDS, and MCAS". It is a cooperation between Patient-Led Research Collaborative, #MEAction, Columbia University Mailman School of Public Health, Open Medicine Foundation, The Jackson Laboratory and The University of Edinburgh (MRC).
More information here Thread here
Healthcare
"Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" by Maksoud et al.
This Australian team has conducted a systematic review to determine whether there are clinical characteristics of sleep in ME/CFS patients compared to healthy controls using objective measures such as polysomnography and multiple sleep latency testing. The authors conclude that many of the measurements were inconsistent across the studies and that better designed research is need.
Article here Thread here
COPE
The Committee on Publication Ethics (COPE) responded to Caroline Struthers’s concerned about how Cochrane handled two of its reviews on ME/CFS. It states: “we consider that the journal followed an adequate process and gave the concerns you raised due consideration.”
Response and Thread here
CBTwatch
On the blog CBTwatch, an anonymous therapist involved in Improving Access to Psychological Therapies (IAPT) testifies: “I’m finding an increasing amount of the people I see have chronic physical health conditions [..] I have had people tell me their symptoms were dismissed for years as being “all in their head”, and I worry I am inadvertently feeding into that damaging narrative.”
Article here Thread here
..............
ME Awareness May 2021
CDC dedicated a page for the ME/CFS International Awareness Day here
StudyPRN provided free access to their ME/CFS CPD module for the ME Awareness Week here
Austria Greeting from the Minister of Health Wolfgang Mückstein here
Cornell Center for Enervating Neuroimmune Disease Dr. Maureen Hanson provides a Pecha Kucha for ME/CFS here
The Norwegian ME Association allocated money to 4 research projects
Article here (Norwegian) Thread with summary here
Hungary Article about ME including an interview with Ágnes Szarvas in the women's magazine nlc.
Article here (Hungarian) Thread with summary here
Times of Malta Manoel Island lit up to raise awareness about three illnesses. Article here
Independent.ie Living with ME: 'My world has become so small. Constantly managing chronic pain and dealing with brain fog and memory loss is my normal'. Article here
Germany Article in Der Tagesspiegel here Berliner Kurier here ZDF here and here WDR here
UK - Radio Gloucester Interview with Chantelle Parry (from 1.17 min) here
MillionsMissing and MEAction
The ME Action Network Videos
"What is DecodeME? What it will do and how you can take part" - Features Chris Ponting and patients and carers working on the project here
"Cutting edge ME researchers share their research with the #MillionsMissing - #MEAction UK" - with Drs. Bhupesh Prusty, Ronald W Davis and Janet Defoe, and Prof. Sara Tyson here
"How to turn your MP into an ally with Fleur Anderson MP, Alex Chalk MP and Carol Monaghan MP" here
"Medical Education with Dr Nina Muirhead and midwife Hayley Valentine-Howard" here
"Behind the scenes at the James Lind Alliance Priority Setting Partnership" here
"Speaking from the heart with Ron Davis, Janet Dafoe and Linda Neale" here
"Award winning authors talk to #MEAction UK about living and writing with ME" here
"Behind the scenes with #MillionsMissing organisers" here
#MEAction Press release about #MillionsMissing here
Norway Digital awareness campaign here
On the Wight MEAction appeals for governments to respond to ever-growing crisis. Article here
................
Coming events
Irish ME/CFS Association
Webinar May 25th with Dr. John Cullinan and Orla Ní Chomrai about the recently published paper "Understanding the Economic Impact of ME/CFS". Free registration at events@irishmecfs.org
Thread here
Sweden 27th May there will be an open hearing in the Parliament about ME/CFS and infection triggered fatigue syndrome.
More information here Thread here
Norway May 18th Asgeir Lande will be defending his thesis titled "Human leukocyte antigen associations in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and immune modulating treatment."
More information here Thread here
................
Covid-19 and ME
Trial By Error by David Tuller "Journal Editorial Calls for Caution in Exercise-Based Rehab Programs for Long COVID"
Commends the editorial in JOSPT "Humility and Acceptance: Working Within Our Limits With Long COVID and ME/CFS" reported here last week. Tuller interviewed the lead author, Décary, who said he was 'traumatised' by what he read about the PACE trial, and, after consulting patients, produced this editorial to warn against the rapid implementation of unevidenced GET for Long Covid patients with post exertional malaise.
Article here Thread here
U.S. News In Long COVID, Advocates Battling Chronic Fatigue Syndrome See Allies, Hope
A thorough and up-to-date article providing a good overview. "The two conditions have some striking similarities, feeling hopes that research can uncover solutions for both".
Article here Thread here
More items of interest
Svenska Dagbladet Article from Sweden about Long Covid in UK. Includes an interview with ME/CFS specialist dr. David Strain who says it's like CFS, and that treatments lack due to little research.
Article here (paywalled) Thread here
CBC Alberta physiotherapists inundated with long-haul COVID patients
Article and audio segment here Thread here
Bateman Horne Center Long Hauler Message to the ME/CFS & FM Community here
................
S4ME social media: Facebook, Twitter and You Tube
Last edited:
Week beginning 17th May 2021
News, articles and advocacy
Health Affairs "Paradigm Lost: Lessons For Long COVID-19 From A Changing Approach To Chronic Fatigue Syndrome" by Brian Hughes, Steven Lubet and David Tuller
An excellent article describing the paradigm shift happening in the understanding of the causes of ME/CFS and its treatments away from CBT and GET. The proponents' reaction against the draft NICE guideline and the risks to patients with long Covid of these same treatments are raised as an example of the way eminence is used to fight against the rejection of a disproven theory. '...the growing cohort of post-COVID-19 “long haulers” could be the latest casualties of resistance to this long-overdue revolution.'
Article here Thread here
The Science Bit by Brian Hughes describes the above article on which he was co-author. 'Scientific vanity is real. History has shown that many scientists, even prominent ones, would rather cling to the status quo than allow their theories be debunked by data.'
Article here Thread here
UK ME/CFS Priority Setting Partnership
Video, produced by #MEAction UK, with members of the PSP steering group explaining their reasons for joining the steering group, and the process and purpose of the PSP. They highlighted the current survey to find out topics and questions people with ME, carers and clinicians would like to see researched.
Video here (30 minutes) Survey here (closes 5th July) Thread here
EMEA Pan-European ME Patient Survey
A pan-European survey carried out by the Norwegian ME Association. "This survey will be the first of its kind comparing the situation and experiences of ME-patients across European countries". The survey can be undertaken in 12 languages and the aim is more than 10,000 respondents. The survey consists of 18 questions, and takes less than 10 minutes to complete.
Survey and more information here Thread here
#MEAction Scotland "Respond To The Patient Safety Commissioner Role Consultation" This new role is expected to cover safety with medicines and medical devices. #MEAction suggest raising widening it to include harms from therapies such as GET. The consultation is open to anyone who wants to contribute and it closes on 28th May 2021.
Artlcle with link to survey here Thread here
..............
Biomedical news and research
ME Research UK "Viruses and M.E. – Research Call"
'... with the financial support of The Gordon Parish Charitable Trust ... announces a £400,000 joint initiative to fund biomedical research into the role of viruses in ME/CFS globally. The first award has been offered to a European researcher, with the project looking at how viral infections may lead to damage to the mitochondria in ME/CFS.'
The MERUK Spring newsletter, Breakthrough Magazine is available online.
Article here Magazine here Thread here
UK Oxford Brookes University: "Investigating sensory processing and cognitive function in people with ME: a pilot study" is looking for more people with ME and healthy controls who can travel to the university to participate in this study.
Thread with details here
ME/CFS Research Review by Simon McGrath
"For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects"
Three areas of benefit are discussed - focusing on patients' priorities; patient involvement makes research studies better; and focusing on true success. The Priority Setting Partnership and DecodeME are given as examples.
Article here Thread here
Nature Scientific Reports
"Altered endothelial dysfunction-related miRs in plasma from ME/CFS patients" by Blauensteiner et al
This Austrian study used samples from the UK ME/CFS biobank to test whether endothelial dysfunction-related micro RNAs are altered in ME/CFS. Detailed laboratory and statistical analyses showed an increase in this specific group of miRs in ME/CFS. Data from related studies is also discussed.
Paper here Thread here
Technology and Health Care prepress
"Comparison of the finger plethysmography derived stroke volumes by Nexfin CO Trek and suprasternal aortic Doppler derived stroke volume measurements in adults with ME/CFS and in healthy controls" by van Campen et al.
A technical article about two different algorithms used to calculate stroke volume during a tilt table test. When tested on 154 patients and 39 controls one of the algorithms overestimated stroke volume and needed to be calibrated.
Abstract here Thread here
Journal of Molecular Neuroscience
"Study on the Relationship between the miRNA-centered ceRNA Regulatory Network and Fatigue" by Xingzhe Yang et al.
This team from Beijing universities reviewed evidence of over expression of some micro RNA's in people with CFS, suggesting they are involved in the development of CFS by regulating immune response and in fatigue by action on mitochondria.
Article here Thread here
..............
Covid-19 and ME
Broken Battery Long COVID, Post Viral Fatigue Syndrome and ME/CFS
New, excellent video from Broken Battery. It efficiently brings one up to speed on the increasing awareness of overlaps between LC, PVFS and ME/CFS. Also covers the dangers of graded exercise as treatment approach in patients with PEM. Duration: 7.55 min.
Video here Thread here
ME/CFS Alert Interview with Dr. Walter Koroshetz
"In this episode, Llewellyn King and Dr. Walter Koroshetz, Director of the National Institute of Neurological Disorders at the National Institutes of Health, discuss the new goverment funding for long-haul Covid and its impact on ME/CFS research." Duration: 27 minutes.
YouTube video here Thread here
Frontiers in Medicine
Adolescent and Young Adult ME/CFS After Confirmed or Probable COVID-19
This study describes three adolescents who had COVID-19 infections early on during the pandemic and were referred to the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center. After 6 months of illness, all three patients met criteria for ME/CFS.
Article here Thread here
Other items of interest
Body Politic Dr. Nath Presents on the "Neurological Complications with COVID"
YouTube video here (1h 33min) Thread here
Pain Speak Chat with Darren Brown Co-Founder of LongCovid Physio
Podcast here Thread here
Austria Interview by ORF.at with neurologist Micheal Stingl on Long Covid and ME/CFS. He says it's important to be aware of the risks in connection to society opening more up.
Article here (German) Thread here
................
S4ME social media: Facebook, Twitter and You Tube
News, articles and advocacy
Health Affairs "Paradigm Lost: Lessons For Long COVID-19 From A Changing Approach To Chronic Fatigue Syndrome" by Brian Hughes, Steven Lubet and David Tuller
An excellent article describing the paradigm shift happening in the understanding of the causes of ME/CFS and its treatments away from CBT and GET. The proponents' reaction against the draft NICE guideline and the risks to patients with long Covid of these same treatments are raised as an example of the way eminence is used to fight against the rejection of a disproven theory. '...the growing cohort of post-COVID-19 “long haulers” could be the latest casualties of resistance to this long-overdue revolution.'
Article here Thread here
The Science Bit by Brian Hughes describes the above article on which he was co-author. 'Scientific vanity is real. History has shown that many scientists, even prominent ones, would rather cling to the status quo than allow their theories be debunked by data.'
Article here Thread here
UK ME/CFS Priority Setting Partnership
Video, produced by #MEAction UK, with members of the PSP steering group explaining their reasons for joining the steering group, and the process and purpose of the PSP. They highlighted the current survey to find out topics and questions people with ME, carers and clinicians would like to see researched.
Video here (30 minutes) Survey here (closes 5th July) Thread here
EMEA Pan-European ME Patient Survey
A pan-European survey carried out by the Norwegian ME Association. "This survey will be the first of its kind comparing the situation and experiences of ME-patients across European countries". The survey can be undertaken in 12 languages and the aim is more than 10,000 respondents. The survey consists of 18 questions, and takes less than 10 minutes to complete.
Survey and more information here Thread here
#MEAction Scotland "Respond To The Patient Safety Commissioner Role Consultation" This new role is expected to cover safety with medicines and medical devices. #MEAction suggest raising widening it to include harms from therapies such as GET. The consultation is open to anyone who wants to contribute and it closes on 28th May 2021.
Artlcle with link to survey here Thread here
..............
Biomedical news and research
ME Research UK "Viruses and M.E. – Research Call"
'... with the financial support of The Gordon Parish Charitable Trust ... announces a £400,000 joint initiative to fund biomedical research into the role of viruses in ME/CFS globally. The first award has been offered to a European researcher, with the project looking at how viral infections may lead to damage to the mitochondria in ME/CFS.'
The MERUK Spring newsletter, Breakthrough Magazine is available online.
Article here Magazine here Thread here
UK Oxford Brookes University: "Investigating sensory processing and cognitive function in people with ME: a pilot study" is looking for more people with ME and healthy controls who can travel to the university to participate in this study.
Thread with details here
ME/CFS Research Review by Simon McGrath
"For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects"
Three areas of benefit are discussed - focusing on patients' priorities; patient involvement makes research studies better; and focusing on true success. The Priority Setting Partnership and DecodeME are given as examples.
Article here Thread here
Nature Scientific Reports
"Altered endothelial dysfunction-related miRs in plasma from ME/CFS patients" by Blauensteiner et al
This Austrian study used samples from the UK ME/CFS biobank to test whether endothelial dysfunction-related micro RNAs are altered in ME/CFS. Detailed laboratory and statistical analyses showed an increase in this specific group of miRs in ME/CFS. Data from related studies is also discussed.
Paper here Thread here
Technology and Health Care prepress
"Comparison of the finger plethysmography derived stroke volumes by Nexfin CO Trek and suprasternal aortic Doppler derived stroke volume measurements in adults with ME/CFS and in healthy controls" by van Campen et al.
A technical article about two different algorithms used to calculate stroke volume during a tilt table test. When tested on 154 patients and 39 controls one of the algorithms overestimated stroke volume and needed to be calibrated.
Abstract here Thread here
Journal of Molecular Neuroscience
"Study on the Relationship between the miRNA-centered ceRNA Regulatory Network and Fatigue" by Xingzhe Yang et al.
This team from Beijing universities reviewed evidence of over expression of some micro RNA's in people with CFS, suggesting they are involved in the development of CFS by regulating immune response and in fatigue by action on mitochondria.
Article here Thread here
..............
Covid-19 and ME
Broken Battery Long COVID, Post Viral Fatigue Syndrome and ME/CFS
New, excellent video from Broken Battery. It efficiently brings one up to speed on the increasing awareness of overlaps between LC, PVFS and ME/CFS. Also covers the dangers of graded exercise as treatment approach in patients with PEM. Duration: 7.55 min.
Video here Thread here
ME/CFS Alert Interview with Dr. Walter Koroshetz
"In this episode, Llewellyn King and Dr. Walter Koroshetz, Director of the National Institute of Neurological Disorders at the National Institutes of Health, discuss the new goverment funding for long-haul Covid and its impact on ME/CFS research." Duration: 27 minutes.
YouTube video here Thread here
Frontiers in Medicine
Adolescent and Young Adult ME/CFS After Confirmed or Probable COVID-19
This study describes three adolescents who had COVID-19 infections early on during the pandemic and were referred to the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center. After 6 months of illness, all three patients met criteria for ME/CFS.
Article here Thread here
Other items of interest
Body Politic Dr. Nath Presents on the "Neurological Complications with COVID"
YouTube video here (1h 33min) Thread here
Pain Speak Chat with Darren Brown Co-Founder of LongCovid Physio
Podcast here Thread here
Austria Interview by ORF.at with neurologist Micheal Stingl on Long Covid and ME/CFS. He says it's important to be aware of the risks in connection to society opening more up.
Article here (German) Thread here
................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 24th May 2021
News, articles and advocacy
Sweden An open hearing about ME/CFS and post infection fatigue syndrome took place at the Swedish Parliament 27th May.
Recording here Thread here
Also a Parliament member asked whether the Minister for Health and Social Affairs is planning to take any initiatives in line with the patient organisation RME's suggestions of improvement of care in a letter sent to the Ministry back in 2019, which was never replied to. The Minister's answer was general and non committal. RME's chairperson Kerstin Helling commented on Facebook that it didn't give much hope for improvement of the situation for ME sufferers.
Reply here Thread here
The Norwegian ME Association has officially asked the Norwegian Directorate of Health to update their national guidelines for CFS/ME based on international re-evaluation of diagnostic criteria and treatment advice.
Announcement here (Norwegian) Thread here
Physios for ME ME Journal Club
From a tweet: 'At the start of each month we’re going to post an interesting study on ME and open the floor for discussion, critique, implications for practice and lived experience. We'll collate responses and summarise at the end of the month.'
Tweet here Thread here
UK DecodeME A new short video and blog invite people with ME in the UK to become social media ambassadors for the project and ask members of support groups to spread the word. Resources will be available to help working with groups.
Thread with details of how to get involved here
UK Action for ME "Join our ActforME Network and help drive change"
AfME is inviting people in the UK to join their Act for ME network and receive monthly emails with suggestions for online advocacy actions.
Article here Thread here
UK Sheffield ME & Fibro Group Guest speaker this month was Cort Johnson, owner of the Health Rising website.
Thread with video link here
UK Action for ME 'Learn about ME' podcasts.
'Clinician and researcher Dr David Strain talks about working with people with MECFS and LongCovid in the latest episode of the Action for M.E. Learn About M.E podcast'. The podcasts and the CPD module by Dr Nina Muirhead are being promoted to clinicians in Scotland.
Article here Thread here
Ireland
The Irish ME/CFS Association has organized a webinar about their research on the economic impact of ME/CFS. The lecture, featuring John Cullinan from NUI Galway, is now available to watch online.
Video here Thread here
United States
On 26 May the Institute for Neuro-Immune Medicine at Nova Southeastern University in Fort Lauderdale, Florida, organized a virtual conference called “Understanding ME/CFS Today: A Clinical & Research Approach”. Speakers include, amongst others, Nancy Klimas and Alison Bested.
Announcement here Thread here
Cambridgeshire Live Cambridge Dad living with ME becomes so exhausted he can't walk downstairs
Interviews with Mark Harper, Chair of Cambridgeshire ME support group and Dr. Charles Shepherd, Honorary Medical Adviser to the ME Association. The article provides general information about ME and touches upon the upcoming NICE guidelines, Post Covid and the struggle for ME patients to be prioritised for vaccines.
Article here Thread here
Norway Opinion piece in a medical newspaper by specialist in psychology Frøydis Lilledalen who challenges the idea that illness and health is only about finding the perfect balance between activity and stress. She uses ME as an example and emphasises the importance of humility and to listen to the patient.
Opinion piece here (Norwegian) Thread here
..............
Biomedical news and research
Dr. Michael VanElzakker Presentation at the 1st PolyBio Seminar Series
'Studying complex chronic illness at the intersection of the autonomic, neurovascular, and glymphatic systems.' An interesting talk explaining aspects of the structure and function of the vagus nerve, brain stem and brain and their interaction with the body, with research findings on ME/CFS in these areas.
Video here (27 minutes) Thread here
ME Research UK announce funding for a study "ELUCIDATE: Exploring pain and autonomic dysfunction in ME/CFS and temporomandibular disorders". The Principal investigator, Mr James Allison, is an oral surgeon at Newcastle University.
Article here Thread here
BMJ Annals of the Rheumatic Diseases
"The effects of non-invasive vagus nerve stimulation (nVNS) on immunological responses and patient reported outcome measures (PROMs) of fatigue in patients with Chronic Fatigue Syndrome, Fibromyalgia and Rheumatoid Arthritis" by Traianos et al.
13 CFS, 14 FM and 15 RA patients. There was an improvement in self reported daytime sleepiness and fatigue after nVNS which was just statistically significant but with no statistical correction for multiple comparisons, and no control group. Higher baseline IL-6 was predictive of improvement in some PROMs. There were no significant changes in the immune cell subsets or in cytokine response. The authors suggest larger studies are needed.
Paper here Thread here
University of Oslo PhD thesis presentation
"Human leukocyte antigen associations in ME/CFS and immune modulating treatment" by Asgeir Lande.
Following a preface that shows a sympathetic understanding of the severity of ME/CFS and the need for biomedical research, Lande's abstract says: 'the aim of this thesis was to evaluate the hypothesis that autoimmunity is involved in ME/CFS pathogenesis'. The team identified a higher prevalence of two HLA alleles in a sample of over 400 ME/CFS patients than in healthy controls. 44 of these patients were in the cyclophosphamide trial. 'The HLA risk alleles were further significantly associated with comorbid autoimmunity among patients, and with clinical improvement after cyclophosphamide treatment.'
Thread with link to thesis here
..............
Other research
PTOT 4 MECFS Group Webinar with Dr Kenneth Friedman
Dr. Friedman presents the concept of PAPIS, or "post-active phase of infection syndrome" as an umbrella term for post-infectious fatigue illnesses. Since there are parallels in symptoms between long Covid and ME/CFS he recommends physical therapists and occupational therapists apply the same treatments, namely pacing and symptomatic treatments. He will be editing a special edition of the journal Heathcare on PAPIS and inviting therapists to submit papers.
Thread with link to video here
Journal of the Royal Society of Medicine
Mark Vink & Alexandra Vink-Niese and Michiel Tack have written letters to the editor, criticizing some of the weaknesses in a recent study on cognitive behavioral therapy for chronic fatigue from King’s College London. The authors of the study, which include Trudie Chalder and Simon Wessely, have formulated a short response to these criticisms.
Thread here Letter by Vink & Vink-Niese here, Letter by Tack here, response by Chalder et al. here
ME/CFS Skeptic
A new blog post by ME/CFS skeptic explores the long-term follow-up results of GETSET, the latest big exercise trial for patients with ME/CFS. The control group that received no intervention did just as well as the group that received guided graded exercise self-help. This isn’t the first time that the control group catches up over time. A similar pattern was seen in the FINE, PACE, FITNET, and QURE-studies.
Article here Thread here
...............
Covid-19 and ME
USA A COVID-19 Long Haulers Act (H.R. 2754) has formally been introduced before Congress. Solve M.E. say in their announcement about the news: "The bill contains many provisions that will benefit people with ME/CFS, such as nationwide medical education (with ME/CFS specifically identified), expanding prevalence tracking (with ME/CFS included), and research about access to post viral care and diagnostics".
Bill here Thread here
Sweden Interviews on radio and in newspaper Aftonbladet with Elias who has received a diagnosis of ME post Covid. Aftonbladet also has an interview with dr. Bragée who says the health care system needs to prepare for an increase of ME patients after the pandemic.
Radio interview here Aftonbladet interviews here and here Thread here
Broken Battery A twitter thread from A Broken Battery showing excerpts from a webinar for Health Education England (Nov 2020) where Professor Trudie Chalder gave a lecture titled "Fatigue in The Time of COVID-19". During the lecture she misrepresented PEM as health anxiety and "extreme behavioural response" and recommended increased exercise. The twitter thread led to many reactions, among other from professor in rehabilitation Simon Décary: ... "If you are a rehab professional and you make a patient crash from exercise because you don't believe in PEM, this is professional misconduct".
Twitter thread here Thread here
Time Long-Covid-19 Patients Are Getting Diagnosed With Little-Known Illnesses Like POTS
"A significant percentage are suffering from syndromes that few doctors understand or treat, primarily postural orthostatic tachycardia syndrome (POTS) and chronic fatigue syndrome (CFS). In fact, a yearlong wait to see specialists for these syndromes was common even before the ranks of patients were swelled by pandemic newcomers." Includes interview with Dr. Peter S. Rowe who says: "Decades of neglect of POTS and CFS have set us up to fail miserably".
Article here Thread here
Other items of interest
NeurologyToday Drs. Anthony Fauci and Walter Koroshetz on the Turning Point for COVID-19 and the Work That Remains
Article here Thread here
UPI 'Brain fog' can linger with long-haul COVID-19, study says
Article here Thread here
...............
S4ME social media: Facebook, Twitter and You Tube
News, articles and advocacy
Sweden An open hearing about ME/CFS and post infection fatigue syndrome took place at the Swedish Parliament 27th May.
Recording here Thread here
Also a Parliament member asked whether the Minister for Health and Social Affairs is planning to take any initiatives in line with the patient organisation RME's suggestions of improvement of care in a letter sent to the Ministry back in 2019, which was never replied to. The Minister's answer was general and non committal. RME's chairperson Kerstin Helling commented on Facebook that it didn't give much hope for improvement of the situation for ME sufferers.
Reply here Thread here
The Norwegian ME Association has officially asked the Norwegian Directorate of Health to update their national guidelines for CFS/ME based on international re-evaluation of diagnostic criteria and treatment advice.
Announcement here (Norwegian) Thread here
Physios for ME ME Journal Club
From a tweet: 'At the start of each month we’re going to post an interesting study on ME and open the floor for discussion, critique, implications for practice and lived experience. We'll collate responses and summarise at the end of the month.'
Tweet here Thread here
UK DecodeME A new short video and blog invite people with ME in the UK to become social media ambassadors for the project and ask members of support groups to spread the word. Resources will be available to help working with groups.
Thread with details of how to get involved here
UK Action for ME "Join our ActforME Network and help drive change"
AfME is inviting people in the UK to join their Act for ME network and receive monthly emails with suggestions for online advocacy actions.
Article here Thread here
UK Sheffield ME & Fibro Group Guest speaker this month was Cort Johnson, owner of the Health Rising website.
Thread with video link here
UK Action for ME 'Learn about ME' podcasts.
'Clinician and researcher Dr David Strain talks about working with people with MECFS and LongCovid in the latest episode of the Action for M.E. Learn About M.E podcast'. The podcasts and the CPD module by Dr Nina Muirhead are being promoted to clinicians in Scotland.
Article here Thread here
Ireland
The Irish ME/CFS Association has organized a webinar about their research on the economic impact of ME/CFS. The lecture, featuring John Cullinan from NUI Galway, is now available to watch online.
Video here Thread here
United States
On 26 May the Institute for Neuro-Immune Medicine at Nova Southeastern University in Fort Lauderdale, Florida, organized a virtual conference called “Understanding ME/CFS Today: A Clinical & Research Approach”. Speakers include, amongst others, Nancy Klimas and Alison Bested.
Announcement here Thread here
Cambridgeshire Live Cambridge Dad living with ME becomes so exhausted he can't walk downstairs
Interviews with Mark Harper, Chair of Cambridgeshire ME support group and Dr. Charles Shepherd, Honorary Medical Adviser to the ME Association. The article provides general information about ME and touches upon the upcoming NICE guidelines, Post Covid and the struggle for ME patients to be prioritised for vaccines.
Article here Thread here
Norway Opinion piece in a medical newspaper by specialist in psychology Frøydis Lilledalen who challenges the idea that illness and health is only about finding the perfect balance between activity and stress. She uses ME as an example and emphasises the importance of humility and to listen to the patient.
Opinion piece here (Norwegian) Thread here
..............
Biomedical news and research
Dr. Michael VanElzakker Presentation at the 1st PolyBio Seminar Series
'Studying complex chronic illness at the intersection of the autonomic, neurovascular, and glymphatic systems.' An interesting talk explaining aspects of the structure and function of the vagus nerve, brain stem and brain and their interaction with the body, with research findings on ME/CFS in these areas.
Video here (27 minutes) Thread here
ME Research UK announce funding for a study "ELUCIDATE: Exploring pain and autonomic dysfunction in ME/CFS and temporomandibular disorders". The Principal investigator, Mr James Allison, is an oral surgeon at Newcastle University.
Article here Thread here
BMJ Annals of the Rheumatic Diseases
"The effects of non-invasive vagus nerve stimulation (nVNS) on immunological responses and patient reported outcome measures (PROMs) of fatigue in patients with Chronic Fatigue Syndrome, Fibromyalgia and Rheumatoid Arthritis" by Traianos et al.
13 CFS, 14 FM and 15 RA patients. There was an improvement in self reported daytime sleepiness and fatigue after nVNS which was just statistically significant but with no statistical correction for multiple comparisons, and no control group. Higher baseline IL-6 was predictive of improvement in some PROMs. There were no significant changes in the immune cell subsets or in cytokine response. The authors suggest larger studies are needed.
Paper here Thread here
University of Oslo PhD thesis presentation
"Human leukocyte antigen associations in ME/CFS and immune modulating treatment" by Asgeir Lande.
Following a preface that shows a sympathetic understanding of the severity of ME/CFS and the need for biomedical research, Lande's abstract says: 'the aim of this thesis was to evaluate the hypothesis that autoimmunity is involved in ME/CFS pathogenesis'. The team identified a higher prevalence of two HLA alleles in a sample of over 400 ME/CFS patients than in healthy controls. 44 of these patients were in the cyclophosphamide trial. 'The HLA risk alleles were further significantly associated with comorbid autoimmunity among patients, and with clinical improvement after cyclophosphamide treatment.'
Thread with link to thesis here
..............
Other research
PTOT 4 MECFS Group Webinar with Dr Kenneth Friedman
Dr. Friedman presents the concept of PAPIS, or "post-active phase of infection syndrome" as an umbrella term for post-infectious fatigue illnesses. Since there are parallels in symptoms between long Covid and ME/CFS he recommends physical therapists and occupational therapists apply the same treatments, namely pacing and symptomatic treatments. He will be editing a special edition of the journal Heathcare on PAPIS and inviting therapists to submit papers.
Thread with link to video here
Journal of the Royal Society of Medicine
Mark Vink & Alexandra Vink-Niese and Michiel Tack have written letters to the editor, criticizing some of the weaknesses in a recent study on cognitive behavioral therapy for chronic fatigue from King’s College London. The authors of the study, which include Trudie Chalder and Simon Wessely, have formulated a short response to these criticisms.
Thread here Letter by Vink & Vink-Niese here, Letter by Tack here, response by Chalder et al. here
ME/CFS Skeptic
A new blog post by ME/CFS skeptic explores the long-term follow-up results of GETSET, the latest big exercise trial for patients with ME/CFS. The control group that received no intervention did just as well as the group that received guided graded exercise self-help. This isn’t the first time that the control group catches up over time. A similar pattern was seen in the FINE, PACE, FITNET, and QURE-studies.
Article here Thread here
...............
Covid-19 and ME
USA A COVID-19 Long Haulers Act (H.R. 2754) has formally been introduced before Congress. Solve M.E. say in their announcement about the news: "The bill contains many provisions that will benefit people with ME/CFS, such as nationwide medical education (with ME/CFS specifically identified), expanding prevalence tracking (with ME/CFS included), and research about access to post viral care and diagnostics".
Bill here Thread here
Sweden Interviews on radio and in newspaper Aftonbladet with Elias who has received a diagnosis of ME post Covid. Aftonbladet also has an interview with dr. Bragée who says the health care system needs to prepare for an increase of ME patients after the pandemic.
Radio interview here Aftonbladet interviews here and here Thread here
Broken Battery A twitter thread from A Broken Battery showing excerpts from a webinar for Health Education England (Nov 2020) where Professor Trudie Chalder gave a lecture titled "Fatigue in The Time of COVID-19". During the lecture she misrepresented PEM as health anxiety and "extreme behavioural response" and recommended increased exercise. The twitter thread led to many reactions, among other from professor in rehabilitation Simon Décary: ... "If you are a rehab professional and you make a patient crash from exercise because you don't believe in PEM, this is professional misconduct".
Twitter thread here Thread here
Time Long-Covid-19 Patients Are Getting Diagnosed With Little-Known Illnesses Like POTS
"A significant percentage are suffering from syndromes that few doctors understand or treat, primarily postural orthostatic tachycardia syndrome (POTS) and chronic fatigue syndrome (CFS). In fact, a yearlong wait to see specialists for these syndromes was common even before the ranks of patients were swelled by pandemic newcomers." Includes interview with Dr. Peter S. Rowe who says: "Decades of neglect of POTS and CFS have set us up to fail miserably".
Article here Thread here
Other items of interest
NeurologyToday Drs. Anthony Fauci and Walter Koroshetz on the Turning Point for COVID-19 and the Work That Remains
Article here Thread here
UPI 'Brain fog' can linger with long-haul COVID-19, study says
Article here Thread here
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S4ME social media: Facebook, Twitter and You Tube
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