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News in Brief - May 2018
- Thread starter Trish
- Start date
Week beginning 30th April 2018
News
Nederlands Dans Theater short video dedicated ME-patients everywhere. NDT supports Anil van der Zee (@Grigor), former professional ballet dancer with severe ME, in his mission to spread awareness of ME through performance art.
Anil's blog here Thread here
Norway Forskning.no (website about research for general audience) - 'ME-sick psychologist: I'm not the type to get ME, I thought' - article and interview with psychologist who has ME.
Thread here
Canada First ME/CFS Canadian Collaborative Conference was held 3rd to 5th May.
Thread here
In the media
UK BBC iPlayer TV program 'ME and me' available from Tuesday 8th May, featuring the UK ME Biobank team and severe ME sufferers, presented by Emma Donohoe who has ME.
BBC link here Thread here
The Mighty ''ME/CFS Patients and Allies Are Rallying Worldwide to Demand Better Treatment'' by Erin Migdol.
Excellent article describing #MillionsMissing events, aims and the reasons behind the need for awareness.
Article here Thread here
The Irish News: ''Hope for ME: Co Down woman's campaign for the thousands living with chronic fatigue syndrome''
Article here Thread here
....................................................................
Definition of ME/CFS
Trial by Error ''A Q-and-A with Leonard Jason, on Case Definition'' by David Tuller.
Article here Thread here
..................................................................
Biomedical research
Neuroimage: Clinical ''Brain function characteristics of chronic fatigue syndrome: A task fMRI study'' by Shan et al.
''The results suggest the brain responds differently to a cognitive challenge in patients with CFS, with recruitment of wider regions to compensate for lower information capacity.''
Paper here Thread here
....................................................................
Research funding news
Canada Proposal CRC to join forces with US NIH's 3 CRC's to research ME
Thread here
SMCI announces RFA for Ramsay Award medical research program. Applications for research funding close June 30th 2018.
Details here Thread here
..................................................................
MUS commentary
American Journal of Bioethics: ''Why Bioethics Should Be Concerned With Medically Unexplained Symptoms'' by D. O'Leary.
Mixed responses in thread discussion.
Article here Thread here
......................................................................
Action
USA CDC stakeholder call 10 May 2018 3-4 pm (ET)
Thread here
Fundraising
ME Action Fundraising through May for their work for the next year. Target $100,000.
Donate here Thread here
USA Donate up to 5% of your grocery shopping to ME/CFS nonprofits at no cost to you.
Thread here
.................................................................
Advocacy
WHO classifications Updates on status of ICD-11 and changes to other classification and terminology systems by Suzy Chapman (Dx Revision Watch) and Mary Dimmock.
Thread here
Jax Labs ME/CFS blog: Advocate spotlight interview with Mary Dimmock.
Article here Thread here
UK Action for ME and North Bristol NHS Trust have produced new Self Advocacy support material.
Some parts may be useful but it is heavily criticised in our thread discussion.
AfME material here Thread here
...................................................................
Coming events:
12th May 2018 Worldwide events for ME Awareness Day
#MillionsMissing events MEAction information
There are many threads on the forum about events. Here are some:
Germany thread ..... Holland 10th May
UK thread .... Edinburgh event .... Choir in Cornwall .... London event
USA thread
.......................................................................
News
Nederlands Dans Theater short video dedicated ME-patients everywhere. NDT supports Anil van der Zee (@Grigor), former professional ballet dancer with severe ME, in his mission to spread awareness of ME through performance art.
Anil's blog here Thread here
Norway Forskning.no (website about research for general audience) - 'ME-sick psychologist: I'm not the type to get ME, I thought' - article and interview with psychologist who has ME.
Thread here
Canada First ME/CFS Canadian Collaborative Conference was held 3rd to 5th May.
Thread here
In the media
UK BBC iPlayer TV program 'ME and me' available from Tuesday 8th May, featuring the UK ME Biobank team and severe ME sufferers, presented by Emma Donohoe who has ME.
BBC link here Thread here
The Mighty ''ME/CFS Patients and Allies Are Rallying Worldwide to Demand Better Treatment'' by Erin Migdol.
Excellent article describing #MillionsMissing events, aims and the reasons behind the need for awareness.
Article here Thread here
The Irish News: ''Hope for ME: Co Down woman's campaign for the thousands living with chronic fatigue syndrome''
Article here Thread here
....................................................................
Definition of ME/CFS
Trial by Error ''A Q-and-A with Leonard Jason, on Case Definition'' by David Tuller.
Article here Thread here
..................................................................
Biomedical research
Neuroimage: Clinical ''Brain function characteristics of chronic fatigue syndrome: A task fMRI study'' by Shan et al.
''The results suggest the brain responds differently to a cognitive challenge in patients with CFS, with recruitment of wider regions to compensate for lower information capacity.''
Paper here Thread here
....................................................................
Research funding news
Canada Proposal CRC to join forces with US NIH's 3 CRC's to research ME
Thread here
SMCI announces RFA for Ramsay Award medical research program. Applications for research funding close June 30th 2018.
Details here Thread here
..................................................................
MUS commentary
American Journal of Bioethics: ''Why Bioethics Should Be Concerned With Medically Unexplained Symptoms'' by D. O'Leary.
Mixed responses in thread discussion.
Article here Thread here
......................................................................
Action
USA CDC stakeholder call 10 May 2018 3-4 pm (ET)
Thread here
Fundraising
ME Action Fundraising through May for their work for the next year. Target $100,000.
Donate here Thread here
USA Donate up to 5% of your grocery shopping to ME/CFS nonprofits at no cost to you.
Thread here
.................................................................
Advocacy
WHO classifications Updates on status of ICD-11 and changes to other classification and terminology systems by Suzy Chapman (Dx Revision Watch) and Mary Dimmock.
Thread here
Jax Labs ME/CFS blog: Advocate spotlight interview with Mary Dimmock.
Article here Thread here
UK Action for ME and North Bristol NHS Trust have produced new Self Advocacy support material.
Some parts may be useful but it is heavily criticised in our thread discussion.
AfME material here Thread here
...................................................................
Coming events:
12th May 2018 Worldwide events for ME Awareness Day
#MillionsMissing events MEAction information
There are many threads on the forum about events. Here are some:
Germany thread ..... Holland 10th May
UK thread .... Edinburgh event .... Choir in Cornwall .... London event
USA thread
.......................................................................
Week beginning 7th May 2018
Headline News
ME Awareness Day 12th May
This brief news bulletin cannot hope to cover all the activities that happened in the run up to 12th May and on the day, including the hundred cities where #MillionsMissing events were held. Apologies to those whose efforts are not listed - all your efforts are valued.
MEAction information here ... 12th May thread here
................................................................
News
Sweden The Swedish Government has instructed the National Board of Health and Welfare to review the level of knowledge about ME and care for pwME and report by the end of the year.
Thread here
Finland Draft report on planned guidelines based on Fink's functional disorders.
Thread here
Norway Two allocations from The Norwegian ME Association to research - for biobank study related to Fluge and Mella's cyclophosphamide trial, and prospective study on ME in children.
Thread here
Australia ME Australia article ''Boost for people with ME and chronic fatigue syndrome thanks to Parliament'' by Sasha Nimmo
Article here Thread here
Trial by Error ''My visits with Alem Matthees'' by David Tuller.
Article here Thread here
''May 12th-International ME Awareness Day'' by David Tuller.
Article here Thread here
The Body (HIV/AIDS website) Feature Article: ''Using Lessons From HIV Activism, People With 'Chronic Fatigue Syndrome' Fight for the #MillionsMissing''
Article here Thread here
USA CDC Features: "May 12 is ME/CFS and Fibromyalgia International Awareness Day".
Article here Thread here
The ME Show podcast series of interviews by @Gary Burgess in association with the MEA.
Episode 1 now available featuring Jen Brea (@JenB) and Robert Saunders (@Robert 1973) with his song. Well worth a listen.
MEA article with podcast links here Thread here
The International Alliance for ME (IAME) based in Geneva set up recently by Action for ME (UK). Initial actions #MillionsMissing demonstration in Geneva and letter to the WHO.
Article here Letter here Thread here (from post #40)
.........................................................
In the media
UK BBC Newsbeat program 'ME and me' now available.
iPlayer link here YouTube link here Thread here
Newsbeat article ''Chronic fatigue syndrome treatment 'should be withdrawn'''. accompanies and links to the TV program.
Article here Thread here
Newsbeat article ''ME protesters gather in London''.
Article here
Guardian Australia ''ME/Chronic Fatigue Syndrome Opinion: To the #MillionsMissing with ME/CFS, something remarkable is happening'' by Scott Ludlam, former Green Party politician. Excellent article.
Article here Thread here
Sweden Three articles in Aftonbladet, one of Sweden's largest newspapers about a pwME, a government minister and MillionsMissing.
Thread here see posts 137 and 140 for links to English translation.
Readers' Digest ''50 Fitness Myths That Can Seriously Damage Your Health'' includes "Myth: Increased exercise will help chronic fatigue syndrome" points out CDC changed guidance. ''even light exercise can make this condition much worse''.
Article here Thread here
UK Huff Post ''Because Of ME, I Can Only Imagine Being The Mum That Others Get To Be'' Sophie Cooklynn, severe ME sufferer, tells her story.
Article here Thread here
UK Scotland STV News: '''Urgent change' needed to improve lives of ME sufferers.''
Link here Thread here
BBC Scotland: ''Belle and Sebastian singer says ME turned his life upside down''.
Link here Thread here
The Canary Excellent articles by Steve Topple:
''On Saturday ‘millions’ of ‘missing’ people will reappear for the day'' by Steve Topple. Excellent article.
Article here Thread here
''An MP is calling for a debate into one of the ‘biggest medical scandals’ of the 21st century''
Article here Thread here
''Bob Dylan’s ‘Blowin’ in the Wind’ has been re-imagined for the ‘millions missing’: Part One'' Interviews @Robert 1973 about his song and ME politics.
Article here Thread here
Marie Claire ''The important reason why people are leaving shoes around cities'' by Je Banach. Subtitled: ''The #MillionsMissing campaign wants to give a voice to the thirty million people worldwide who suffer from ME''. Good article.
Article here Thread here
UK Metro article and two radio interviews about the IiMER funded successful trial of robots in the classroom to enable children with ME to 'attend' school from home.
Article here Thread here
UK - A sample of articles in local newspapers:
The Bristol Cable: #MillionsMissing: the campaign for ME equality.
Article here Thread here
Loughborough Echo: ''MP Nicky Morgan to raise awareness of ME illness''.
Article here Thread here
Eastern Daily Press ''ME Awareness Week: ‘Missing behind closed curtains for 12 years’ – Woman describes living with M.E.''
Article here Thread here
Leamington Observer ''ME sufferers speak out about their battle with the 'invisible illness'''
Article here Thread here
..........................................................
Biomedical Research
Frontiers in Immunology ''Association of T and NK Cell Phenotype With the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)'' by Rivas et al.
Paper here Thread here
Mediators of Inflammation preprint ''Reduction of glucocorticoid receptor function in chronic fatigue syndrome'' by Watson, Newton et al.
Paper pdf here Thread here
Chicago Reader Article: ''The hidden ME too: 100,000 people in Illinois could suffer from debilitating disease'' by Megan Doherty
Discusses qEEG Brain Research at DePaul University (Jason et al.) linking brain activity and cognitive dysfunction.
Article here Thread here
........................................................
Psychosocial Research
Journal of Community Psychology ''Effects of unsupportive social interactions, stigma, and symptoms on patients with ME and CFS'' by McManimen, Jason, et al.
Good article.
Article here Thread here
BMJ Journal of Neurology, Neurosurgery and Psychiatry ''A unifying theory for cognitive abnormalities in functional neurological disorders'' , Mark J Edwards et al.
Takes a range of small studies on FND, CFS and FM, and tries to form a theory from limited and contradictory data. Not a recommendation.
Paper here Thread here
Scandinavian Journal of Psychology ''Patients with chronic fatigue syndrome do not score higher on the autism‐spectrum quotient than healthy controls'' by Bileviciute‐Ljungar et al
Paper here Thread here
.......................................................
PACE trial
''PACE trial: Whatever happened to Actigraphy?'' Blog article by @Lucibee.
Blog here Thread here
British Journal of Sports Medicine invites (via Twitter) submissions addressing PACE limitations.
Thread here
........................................................
Useful Resources
Information for professionals dealing with children with ME in education
''When children don't get well'' by Claudia Gillberg, co-author on Utting-Wolff Spouts blog introducing:
''TIME FOR A PROFESSIONAL RETHINK ON ME : Your heart is as important as your head'' by Jane Colby, Executive Director of Tymes Trust.
Articles here Thread here
.....................................................................
Some blog posts
''Trust in the context of ME'' by Sally Burch (@Keela Too)
Article here Thread here
''Don't call the doctor'' describes an experience of going to A&E.
Article here Thread here
''One Dance: Millions Missing 2018'' by Jennie Spotila
Article here Thread here
''How many times must a story be told...'' by Spoonseeker.
Article here Thread here
..........................................................
Advocacy Action
Worldwide Action: Sign #MEAction’s Letter to Francis Collins by May 16th
MEAction information here Thread here [Edit - corrected link to thread]
Australia The #MEAction Network Australia. If you’ve been harmed by GET, write a letter to one of the campaign targets (RACGP President or Chief Medical Officer) or your local MP to explain the impact on you of GET and to ask for change.
Thread here
UK New Early Day Motion Launched by Carol Monaghan MP. E-mail your MP to ask them to sign it to give it a chance of getting a parliamentary debate.
MEA article here Thread here
..........................................................
Music
Music4ME Album release 12 MAY. Original songs and poetry composed and performed by people with M.E and their carers or family about their experiences of living with M.E. Fundraiser for ME research and education.
Website here Thread here
Songs of Silence Album by Anette Gilje, Norwegian ME sufferer and advocate. Now released in English.
Album here Thread here
.........................................................
Coming Events
USA Meeting of the US CFS Advisory Committee June 20th and 21st 2018
Thread here
.........................................................
Headline News
ME Awareness Day 12th May
This brief news bulletin cannot hope to cover all the activities that happened in the run up to 12th May and on the day, including the hundred cities where #MillionsMissing events were held. Apologies to those whose efforts are not listed - all your efforts are valued.
MEAction information here ... 12th May thread here
................................................................
News
Sweden The Swedish Government has instructed the National Board of Health and Welfare to review the level of knowledge about ME and care for pwME and report by the end of the year.
Thread here
Finland Draft report on planned guidelines based on Fink's functional disorders.
Thread here
Norway Two allocations from The Norwegian ME Association to research - for biobank study related to Fluge and Mella's cyclophosphamide trial, and prospective study on ME in children.
Thread here
Australia ME Australia article ''Boost for people with ME and chronic fatigue syndrome thanks to Parliament'' by Sasha Nimmo
Article here Thread here
Trial by Error ''My visits with Alem Matthees'' by David Tuller.
Article here Thread here
''May 12th-International ME Awareness Day'' by David Tuller.
Article here Thread here
The Body (HIV/AIDS website) Feature Article: ''Using Lessons From HIV Activism, People With 'Chronic Fatigue Syndrome' Fight for the #MillionsMissing''
Article here Thread here
USA CDC Features: "May 12 is ME/CFS and Fibromyalgia International Awareness Day".
Article here Thread here
The ME Show podcast series of interviews by @Gary Burgess in association with the MEA.
Episode 1 now available featuring Jen Brea (@JenB) and Robert Saunders (@Robert 1973) with his song. Well worth a listen.
MEA article with podcast links here Thread here
The International Alliance for ME (IAME) based in Geneva set up recently by Action for ME (UK). Initial actions #MillionsMissing demonstration in Geneva and letter to the WHO.
Article here Letter here Thread here (from post #40)
.........................................................
In the media
UK BBC Newsbeat program 'ME and me' now available.
iPlayer link here YouTube link here Thread here
Newsbeat article ''Chronic fatigue syndrome treatment 'should be withdrawn'''. accompanies and links to the TV program.
Article here Thread here
Newsbeat article ''ME protesters gather in London''.
Article here
Guardian Australia ''ME/Chronic Fatigue Syndrome Opinion: To the #MillionsMissing with ME/CFS, something remarkable is happening'' by Scott Ludlam, former Green Party politician. Excellent article.
Article here Thread here
Sweden Three articles in Aftonbladet, one of Sweden's largest newspapers about a pwME, a government minister and MillionsMissing.
Thread here see posts 137 and 140 for links to English translation.
Readers' Digest ''50 Fitness Myths That Can Seriously Damage Your Health'' includes "Myth: Increased exercise will help chronic fatigue syndrome" points out CDC changed guidance. ''even light exercise can make this condition much worse''.
Article here Thread here
UK Huff Post ''Because Of ME, I Can Only Imagine Being The Mum That Others Get To Be'' Sophie Cooklynn, severe ME sufferer, tells her story.
Article here Thread here
UK Scotland STV News: '''Urgent change' needed to improve lives of ME sufferers.''
Link here Thread here
BBC Scotland: ''Belle and Sebastian singer says ME turned his life upside down''.
Link here Thread here
The Canary Excellent articles by Steve Topple:
''On Saturday ‘millions’ of ‘missing’ people will reappear for the day'' by Steve Topple. Excellent article.
Article here Thread here
''An MP is calling for a debate into one of the ‘biggest medical scandals’ of the 21st century''
Article here Thread here
''Bob Dylan’s ‘Blowin’ in the Wind’ has been re-imagined for the ‘millions missing’: Part One'' Interviews @Robert 1973 about his song and ME politics.
Article here Thread here
Marie Claire ''The important reason why people are leaving shoes around cities'' by Je Banach. Subtitled: ''The #MillionsMissing campaign wants to give a voice to the thirty million people worldwide who suffer from ME''. Good article.
Article here Thread here
UK Metro article and two radio interviews about the IiMER funded successful trial of robots in the classroom to enable children with ME to 'attend' school from home.
Article here Thread here
UK - A sample of articles in local newspapers:
The Bristol Cable: #MillionsMissing: the campaign for ME equality.
Article here Thread here
Loughborough Echo: ''MP Nicky Morgan to raise awareness of ME illness''.
Article here Thread here
Eastern Daily Press ''ME Awareness Week: ‘Missing behind closed curtains for 12 years’ – Woman describes living with M.E.''
Article here Thread here
Leamington Observer ''ME sufferers speak out about their battle with the 'invisible illness'''
Article here Thread here
..........................................................
Biomedical Research
Frontiers in Immunology ''Association of T and NK Cell Phenotype With the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)'' by Rivas et al.
Paper here Thread here
Mediators of Inflammation preprint ''Reduction of glucocorticoid receptor function in chronic fatigue syndrome'' by Watson, Newton et al.
Paper pdf here Thread here
Chicago Reader Article: ''The hidden ME too: 100,000 people in Illinois could suffer from debilitating disease'' by Megan Doherty
Discusses qEEG Brain Research at DePaul University (Jason et al.) linking brain activity and cognitive dysfunction.
Article here Thread here
........................................................
Psychosocial Research
Journal of Community Psychology ''Effects of unsupportive social interactions, stigma, and symptoms on patients with ME and CFS'' by McManimen, Jason, et al.
Good article.
Article here Thread here
BMJ Journal of Neurology, Neurosurgery and Psychiatry ''A unifying theory for cognitive abnormalities in functional neurological disorders'' , Mark J Edwards et al.
Takes a range of small studies on FND, CFS and FM, and tries to form a theory from limited and contradictory data. Not a recommendation.
Paper here Thread here
Scandinavian Journal of Psychology ''Patients with chronic fatigue syndrome do not score higher on the autism‐spectrum quotient than healthy controls'' by Bileviciute‐Ljungar et al
Paper here Thread here
.......................................................
PACE trial
''PACE trial: Whatever happened to Actigraphy?'' Blog article by @Lucibee.
Blog here Thread here
British Journal of Sports Medicine invites (via Twitter) submissions addressing PACE limitations.
Thread here
........................................................
Useful Resources
Information for professionals dealing with children with ME in education
''When children don't get well'' by Claudia Gillberg, co-author on Utting-Wolff Spouts blog introducing:
''TIME FOR A PROFESSIONAL RETHINK ON ME : Your heart is as important as your head'' by Jane Colby, Executive Director of Tymes Trust.
Articles here Thread here
.....................................................................
Some blog posts
''Trust in the context of ME'' by Sally Burch (@Keela Too)
Article here Thread here
''Don't call the doctor'' describes an experience of going to A&E.
Article here Thread here
''One Dance: Millions Missing 2018'' by Jennie Spotila
Article here Thread here
''How many times must a story be told...'' by Spoonseeker.
Article here Thread here
..........................................................
Advocacy Action
Worldwide Action: Sign #MEAction’s Letter to Francis Collins by May 16th
MEAction information here Thread here [Edit - corrected link to thread]
Australia The #MEAction Network Australia. If you’ve been harmed by GET, write a letter to one of the campaign targets (RACGP President or Chief Medical Officer) or your local MP to explain the impact on you of GET and to ask for change.
Thread here
UK New Early Day Motion Launched by Carol Monaghan MP. E-mail your MP to ask them to sign it to give it a chance of getting a parliamentary debate.
MEA article here Thread here
..........................................................
Music
Music4ME Album release 12 MAY. Original songs and poetry composed and performed by people with M.E and their carers or family about their experiences of living with M.E. Fundraiser for ME research and education.
Website here Thread here
Songs of Silence Album by Anette Gilje, Norwegian ME sufferer and advocate. Now released in English.
Album here Thread here
.........................................................
Coming Events
USA Meeting of the US CFS Advisory Committee June 20th and 21st 2018
Thread here
.........................................................
Last edited:
Week beginning 14th May 2018
News
USA Senator Ed Markey introduces resolution to encourage immediate government response for ME/CFS. SMCI report on Advocacy Day in Washington.
Thread here
UK The inquest into the tragic death of Merryn Crofts has ruled that the cause of death was ME. The thread includes links to several newspaper articles.
MEA article here Thread here
..........................................................
In the media
Denmark - Manifest to health authorities from 85 ME-patients printed in a Danish newspaper.
Thread here
UK Liverpool Echo ''Hairdresser who loved life says he feared he would die after developing 'tightrope' condition'' good article about severe ME sufferer who was wrongly advised and misdiagnosed for years. MEA quoted.
Article here Thread here
New Zealand - Stuff News Website - ''I'm not looking for pity, just a cure'' by Melissa Bailey.
Article here Thread here
USA - Bustle (Online Womens' Magazine) - ''What Is Myalgic Encephalomyelitis? The “Millions Missing” Hashtag Is Raising Awareness Of The Chronic Illness Through Social Media'' by James Loke Hale.
Article here Thread here
The Canary More excellent articles this week from Steve Topple:
''Bob Dylan’s ‘Blowin’ in the Wind’ has been re-imagined for the ‘millions missing’: Part Two'' continues last week's article, with commentary on PACE, the DWP, vested interests and the current campaign.
Article here Thread here
''I was humbled by the ‘millions missing’ yesterday. Now it’s time for unrest.'' Steve Topple writes of his experience of going to London #MillionsMissing, and the injustice of how pwme are treated.
Article here Thread here
''An ex-professional ballet dancer is using his art for the ‘millions missing’''
A moving interview with Anil van der Zee (@Grigor) about his severe ME and his #Art2CureME campaign.
Article here Thread here
Australia Canberra Times: '''I'm at my wit's end': why chronic fatigue patients are fed up'' Good article about 2 pwme, problems with benefits, GET and getting good medical help.
Article here Thread here
..............................................................
Biomedical research
Clinical Infectious Diseases ''C-Reactive Protein Response in Patients With Post-Treatment Lyme Disease Symptoms Versus Those With ME/CFS'' by Uhde et al.
Post-Lyme had higher CRP than controls in previous study. This study showed ME/CFS patients' CRP was not significantly higher than controls.
Paper here Thread here
Sleep Medicine Reviews ''The putative role of oxidative stress and inflammation in the pathophysiology of sleep dysfunction across neuropsychiatric disorders'' by Carvalho et al.
Focuses on CFS, bipolar disorder and MS. Speculates that systemic inflammation may affect some cells in brain regions that affect sleep.
Article here Thread here
................................................................
Biomedical Research News
ME Association Ramsay Research Fund invests in new study with ME/CFS Biobank to examine dysfunctional immune system and energy metabolism. Also involves collaboration with UCL and Melbourne teams.
MEA article here Thread here
MERUK (ME Research UK) Latest issue of Breakthrough Magazine available as free pdf - included articles on biomedical research they fund and other ME news.
Breakthrough pdf here Thread here
Solve Latest Solve ME/CFS Chronicle available free online. News of Solve people and projects - research and advocacy.
Chronicle pdf here Thread here
...........................................................
Psychosocial research
Journal of Sleep Research ''Poor self‐reported sleep quality and health‐related quality of life'' by Castro-Marrero et al.
Paper here Thread here
............................................................
Psychosocial research commentary
Australia: Trial by Error: ''Australia’s Online GET/CBT Education Program'' by David Tuller.
Details the flaws in a protocol for a trial of a program of doctor and therapist education in using GET/CBT for ME/CFS.
Article here Thread here
..............................................................
Diagnosis
Diagnostics Commentary: ''Dutch Health Council Advisory Report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the Wrong Turn'' by Frank Twisk.
Defines ME and CFS as different diseases, and concludes the adoption of ME/CFS (SEID) by the Dutch Council is detrimental to research and patient care.
Article here Thread here
....................................................................
Interviews
Jackson Labs ME/CFS blog ''Patient Advocate Interview - Jen Brea''.
Article here Thread here
The ME Show Episode 2 - @Gary Burgess interviews Dr Charles Shepherd, Medical Adviser to the MEA. Excellent interview covering his own experience of ME, his career, the latest research and the NICE guidelines.
Audio links here Thread here
Just Talking Podcast with Ryan Prior: Discusses CNN, ME/CFS and Millions Missing.
Podcast here Thread here
ME Australia: ''Meet the Scientists: Fane Mensah''. UCL researcher interviewed by Sasha Nimmo.
Article here Thread here
.....................................................................
The psychobabblers try to hijack our message:
BACME (UK organisation of therapists who use BPS approach) ''Message from the Chair BACME on ME Awareness Month'' Note their odd choice of patient support groups listed.
Article here Thread here
UK NIHR (National Institute of Health Research) blog. ''Worries that keep you awake at night'' by Esther Crawley, whose research is mainly funded by NIHR, boasts about herself and her work, including inaccurate statistics.
Article here Thread here
......................................................................
Action
Scotland: ‘ME Awareness Week’ New Motion from Gail Ross, MSP, in the Scottish Parliament. Write to your MSP asking them to support it.
MEA article here Thread here
#MEAction: Four things you can do to advance the fight for health equality.
Article here Thread here
UK TV program wants short video clips (under 20 sec) of pwme talking about their illness and how it affects them. By 29th May.
Article here Thread here
...................................................................
Coming Events
UK IiMER International Research Conference 1st June
(Also Biomedical Research Colloquium for researchers only 30th - 31st May).
Details here Thread here
Colloquium details here
UK CMRC Conference 19th - 20th September. Registration now open.
Details here Thread here
.................................................................
PDF version here
News
USA Senator Ed Markey introduces resolution to encourage immediate government response for ME/CFS. SMCI report on Advocacy Day in Washington.
Thread here
UK The inquest into the tragic death of Merryn Crofts has ruled that the cause of death was ME. The thread includes links to several newspaper articles.
MEA article here Thread here
..........................................................
In the media
Denmark - Manifest to health authorities from 85 ME-patients printed in a Danish newspaper.
Thread here
UK Liverpool Echo ''Hairdresser who loved life says he feared he would die after developing 'tightrope' condition'' good article about severe ME sufferer who was wrongly advised and misdiagnosed for years. MEA quoted.
Article here Thread here
New Zealand - Stuff News Website - ''I'm not looking for pity, just a cure'' by Melissa Bailey.
Article here Thread here
USA - Bustle (Online Womens' Magazine) - ''What Is Myalgic Encephalomyelitis? The “Millions Missing” Hashtag Is Raising Awareness Of The Chronic Illness Through Social Media'' by James Loke Hale.
Article here Thread here
The Canary More excellent articles this week from Steve Topple:
''Bob Dylan’s ‘Blowin’ in the Wind’ has been re-imagined for the ‘millions missing’: Part Two'' continues last week's article, with commentary on PACE, the DWP, vested interests and the current campaign.
Article here Thread here
''I was humbled by the ‘millions missing’ yesterday. Now it’s time for unrest.'' Steve Topple writes of his experience of going to London #MillionsMissing, and the injustice of how pwme are treated.
Article here Thread here
''An ex-professional ballet dancer is using his art for the ‘millions missing’''
A moving interview with Anil van der Zee (@Grigor) about his severe ME and his #Art2CureME campaign.
Article here Thread here
Australia Canberra Times: '''I'm at my wit's end': why chronic fatigue patients are fed up'' Good article about 2 pwme, problems with benefits, GET and getting good medical help.
Article here Thread here
..............................................................
Biomedical research
Clinical Infectious Diseases ''C-Reactive Protein Response in Patients With Post-Treatment Lyme Disease Symptoms Versus Those With ME/CFS'' by Uhde et al.
Post-Lyme had higher CRP than controls in previous study. This study showed ME/CFS patients' CRP was not significantly higher than controls.
Paper here Thread here
Sleep Medicine Reviews ''The putative role of oxidative stress and inflammation in the pathophysiology of sleep dysfunction across neuropsychiatric disorders'' by Carvalho et al.
Focuses on CFS, bipolar disorder and MS. Speculates that systemic inflammation may affect some cells in brain regions that affect sleep.
Article here Thread here
................................................................
Biomedical Research News
ME Association Ramsay Research Fund invests in new study with ME/CFS Biobank to examine dysfunctional immune system and energy metabolism. Also involves collaboration with UCL and Melbourne teams.
MEA article here Thread here
MERUK (ME Research UK) Latest issue of Breakthrough Magazine available as free pdf - included articles on biomedical research they fund and other ME news.
Breakthrough pdf here Thread here
Solve Latest Solve ME/CFS Chronicle available free online. News of Solve people and projects - research and advocacy.
Chronicle pdf here Thread here
...........................................................
Psychosocial research
Journal of Sleep Research ''Poor self‐reported sleep quality and health‐related quality of life'' by Castro-Marrero et al.
Paper here Thread here
............................................................
Psychosocial research commentary
Australia: Trial by Error: ''Australia’s Online GET/CBT Education Program'' by David Tuller.
Details the flaws in a protocol for a trial of a program of doctor and therapist education in using GET/CBT for ME/CFS.
Article here Thread here
..............................................................
Diagnosis
Diagnostics Commentary: ''Dutch Health Council Advisory Report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the Wrong Turn'' by Frank Twisk.
Defines ME and CFS as different diseases, and concludes the adoption of ME/CFS (SEID) by the Dutch Council is detrimental to research and patient care.
Article here Thread here
....................................................................
Interviews
Jackson Labs ME/CFS blog ''Patient Advocate Interview - Jen Brea''.
Article here Thread here
The ME Show Episode 2 - @Gary Burgess interviews Dr Charles Shepherd, Medical Adviser to the MEA. Excellent interview covering his own experience of ME, his career, the latest research and the NICE guidelines.
Audio links here Thread here
Just Talking Podcast with Ryan Prior: Discusses CNN, ME/CFS and Millions Missing.
Podcast here Thread here
ME Australia: ''Meet the Scientists: Fane Mensah''. UCL researcher interviewed by Sasha Nimmo.
Article here Thread here
.....................................................................
The psychobabblers try to hijack our message:
BACME (UK organisation of therapists who use BPS approach) ''Message from the Chair BACME on ME Awareness Month'' Note their odd choice of patient support groups listed.
Article here Thread here
UK NIHR (National Institute of Health Research) blog. ''Worries that keep you awake at night'' by Esther Crawley, whose research is mainly funded by NIHR, boasts about herself and her work, including inaccurate statistics.
Article here Thread here
......................................................................
Action
Scotland: ‘ME Awareness Week’ New Motion from Gail Ross, MSP, in the Scottish Parliament. Write to your MSP asking them to support it.
MEA article here Thread here
#MEAction: Four things you can do to advance the fight for health equality.
Article here Thread here
UK TV program wants short video clips (under 20 sec) of pwme talking about their illness and how it affects them. By 29th May.
Article here Thread here
...................................................................
Coming Events
UK IiMER International Research Conference 1st June
(Also Biomedical Research Colloquium for researchers only 30th - 31st May).
Details here Thread here
Colloquium details here
UK CMRC Conference 19th - 20th September. Registration now open.
Details here Thread here
.................................................................
PDF version here
Last edited:
Week beginning 21st May 2018
News
SMCI announces new Chief Scientific Officer, Sadie Whittaker, PhD. She starts immediately, and will attend the IiMER conference this week with SMCI President Carol Head.
Thread here
71st World Health Assembly - Side event to raise awareness of ME was hosted by IAME (International Alliance for ME). It highlighted the need for accelerated biomedical research, and training and education for health professionals
Article here Thread here
Germany - Update on the ME/CFS guidelines. Downgraded from guideline to opinion piece.
Thread here post #250
UK NICE stakeholder meeting was held on 25th May. Timetable for future stages and Draft Scoping Report were published ahead of the meeting.
MEA article with timetable Draft Scoping Report Thread here
UK Parliamentary answers to questions from Carol Monaghan MP on funding for ME research.
MEA article here Parliamentary answers here Thread here
Several threads have been started on the forum to share regional news.
New Zealand and the Pacific Islands
Scandinavia
..................................................................
In the media
Norway Documentary about ME and RituxME trial and researchers. In Norwegian. Also several positive news reports.
Thread here post #185
The Times UK - ''ME sufferer who was dismissed as hysterical vindicated in death'' by Lucy Bannerman. Excellent article about Merryn Crofts who died of ME last year and the way ME is still misunderstood.
Article here Thread here
New York Times ''Love Means Never Having to Say... Anything''. A very moving article by Jamison Hill who has severe ME.
Article here Thread here
The Conversation ''What causes chronic fatigue? What we know, don’t know and suspect'' by Dr Mark Guthridge, Senior Research Fellow at Monash University, Melbourne. Good article.
Thread here Article here
The Canary ''The truth about NHS research funding that should shame the government'' by Steve Topple. Excellent article on lack of research funding for ME in the UK. Refers to Carol Monaghan's parliamentary questions and quotes information from the MEA.
Article here Thread here
Otago Daily Times (NZ) ''Shedding light on an invisible illness'' and ''Hope in antioxidant’s effects on energy production''. Good articles about pwme and Dr Warren Tate's research, including recently acquired Seahorse technology.
Articles here and here Thread here
...................................................................
Articles blogs and podcasts
The ME Show Episode 3 - @Gary Burgess interviews Carol Monaghan, MP about her work on raising ME and the PACE trial in the UK Parliament.
Audio links here Thread here
Trial by Error: ''More on the CDC; Reader’s Digest; and BBC’s Newsbeat'' by David Tuller.
The CDC is not spreading it's advice on ME to major providers of health care in the USA who still recommend GET, Readers Digest says exercise is bad for pwME, and Newsbeat reveals the names of the 'experts' quoted on its program.
Article here Thread here
Occupy ME Blog - ''The NIH Pilot Program: Wait and See'' by Jennie Spotila. An update on the slow progress of the NIH trial, and the continuing low funding for ME research.
Article here Thread here
Interview Howard Bloom, US publicist and writer who had severe ME for 15 years interviewed by Joe Rogan. One man's journey from severe ME to improved health.
Video here Thread here
...................................................................
Biomedical Research
International Journal of Clinical Medicine ''Transient Receptor Potential Ion Channels in the Etiology and Pathomechanism of CFS/ME'' by Staines, Marshall-Gradisnik et al.
Review and hypotheses, no new data.
Paper here Thread here
......................................................................
Research News
USA OMF creates new Harvard ME/CFS Collaborative Research Center with $1.8m with the focus on muscle biopsy studies, PEM and clinical trials, and expands Stanford Data Center.
Article here Thread here
OMF update Dr Ron Davis video update on current research funded by the Open Medicine Foundation. Projects under way and papers being written.
Video here Thread here
UK New biomedical research PhD launched in Scotland supervised by @Chris Ponting, to study T cells in ME/CFS.
Article here Thread here
.................................................................
Psychosocial research
Korean Journal of Family Medicine ''Comparison of Fatigue Severity and Quality of Life between Unexplained Fatigue Patients and Explained Fatigue Patients'', Kim et al.
Patients whose fatigue is not explained by medical tests found to have a lower quality of life than those whose fatigue is explained.
Paper here Thread here
......................................................................
Action
UK ME Association: ''Government Inquiry into support for children and young people with special educational needs and disabilities (SEND)''. Submit written evidence to the inquiry by 14th June.
MEA article here Thread here
Fundraising
#ME Action Network have just announced a fundraiser for a U.K. organiser.
“to support another year of mass awareness, medical and scientific outreach, advocacy, and community for impact like #MillionsMissing and our parliamentary actions”.
Information and Donations here Thread here
..................................................................
Coming Events
USA Stanford University Second Annual Community Symposium on the Molecular Basis of ME/CFS sponsored by OMF 29 Sept 2018. It will be live streamed.
Article here Thread here
See also IiMER and CMRC conferences listed last week.
....................................................................
PDF version here
News
SMCI announces new Chief Scientific Officer, Sadie Whittaker, PhD. She starts immediately, and will attend the IiMER conference this week with SMCI President Carol Head.
Thread here
71st World Health Assembly - Side event to raise awareness of ME was hosted by IAME (International Alliance for ME). It highlighted the need for accelerated biomedical research, and training and education for health professionals
Article here Thread here
Germany - Update on the ME/CFS guidelines. Downgraded from guideline to opinion piece.
Thread here post #250
UK NICE stakeholder meeting was held on 25th May. Timetable for future stages and Draft Scoping Report were published ahead of the meeting.
MEA article with timetable Draft Scoping Report Thread here
UK Parliamentary answers to questions from Carol Monaghan MP on funding for ME research.
MEA article here Parliamentary answers here Thread here
Several threads have been started on the forum to share regional news.
New Zealand and the Pacific Islands
Scandinavia
..................................................................
In the media
Norway Documentary about ME and RituxME trial and researchers. In Norwegian. Also several positive news reports.
Thread here post #185
The Times UK - ''ME sufferer who was dismissed as hysterical vindicated in death'' by Lucy Bannerman. Excellent article about Merryn Crofts who died of ME last year and the way ME is still misunderstood.
Article here Thread here
New York Times ''Love Means Never Having to Say... Anything''. A very moving article by Jamison Hill who has severe ME.
Article here Thread here
The Conversation ''What causes chronic fatigue? What we know, don’t know and suspect'' by Dr Mark Guthridge, Senior Research Fellow at Monash University, Melbourne. Good article.
Thread here Article here
The Canary ''The truth about NHS research funding that should shame the government'' by Steve Topple. Excellent article on lack of research funding for ME in the UK. Refers to Carol Monaghan's parliamentary questions and quotes information from the MEA.
Article here Thread here
Otago Daily Times (NZ) ''Shedding light on an invisible illness'' and ''Hope in antioxidant’s effects on energy production''. Good articles about pwme and Dr Warren Tate's research, including recently acquired Seahorse technology.
Articles here and here Thread here
...................................................................
Articles blogs and podcasts
The ME Show Episode 3 - @Gary Burgess interviews Carol Monaghan, MP about her work on raising ME and the PACE trial in the UK Parliament.
Audio links here Thread here
Trial by Error: ''More on the CDC; Reader’s Digest; and BBC’s Newsbeat'' by David Tuller.
The CDC is not spreading it's advice on ME to major providers of health care in the USA who still recommend GET, Readers Digest says exercise is bad for pwME, and Newsbeat reveals the names of the 'experts' quoted on its program.
Article here Thread here
Occupy ME Blog - ''The NIH Pilot Program: Wait and See'' by Jennie Spotila. An update on the slow progress of the NIH trial, and the continuing low funding for ME research.
Article here Thread here
Interview Howard Bloom, US publicist and writer who had severe ME for 15 years interviewed by Joe Rogan. One man's journey from severe ME to improved health.
Video here Thread here
...................................................................
Biomedical Research
International Journal of Clinical Medicine ''Transient Receptor Potential Ion Channels in the Etiology and Pathomechanism of CFS/ME'' by Staines, Marshall-Gradisnik et al.
Review and hypotheses, no new data.
Paper here Thread here
......................................................................
Research News
USA OMF creates new Harvard ME/CFS Collaborative Research Center with $1.8m with the focus on muscle biopsy studies, PEM and clinical trials, and expands Stanford Data Center.
Article here Thread here
OMF update Dr Ron Davis video update on current research funded by the Open Medicine Foundation. Projects under way and papers being written.
Video here Thread here
UK New biomedical research PhD launched in Scotland supervised by @Chris Ponting, to study T cells in ME/CFS.
Article here Thread here
.................................................................
Psychosocial research
Korean Journal of Family Medicine ''Comparison of Fatigue Severity and Quality of Life between Unexplained Fatigue Patients and Explained Fatigue Patients'', Kim et al.
Patients whose fatigue is not explained by medical tests found to have a lower quality of life than those whose fatigue is explained.
Paper here Thread here
......................................................................
Action
UK ME Association: ''Government Inquiry into support for children and young people with special educational needs and disabilities (SEND)''. Submit written evidence to the inquiry by 14th June.
MEA article here Thread here
Fundraising
#ME Action Network have just announced a fundraiser for a U.K. organiser.
“to support another year of mass awareness, medical and scientific outreach, advocacy, and community for impact like #MillionsMissing and our parliamentary actions”.
Information and Donations here Thread here
..................................................................
Coming Events
USA Stanford University Second Annual Community Symposium on the Molecular Basis of ME/CFS sponsored by OMF 29 Sept 2018. It will be live streamed.
Article here Thread here
See also IiMER and CMRC conferences listed last week.
....................................................................
PDF version here
Last edited:
Week beginning 28th May 2018
News
UK IiMER 13th Invest in ME Research International ME Conference was held on 1st June, following a 2 day research colloquium.
Thread here
UK MEA article: ''The ME Association and Press Coverage of Merryn Crofts Inquest'' by Dr Charles Shepherd. Describes MEA involvement in the coverage, publishes the press release, and discusses the wider implications.
Article here Thread here
Australia ME Action article: ''Who is advising the Australian government on ME and CFS research and treatment guidelines?'' by Sasha Nimmo. Includes details of appointees to the NHMRC ME/CFS Advisory committee.
Article here Thread here
Australia ''Conference Poster: Consumers Choosing Wisely. GET for ME/CFS, a case study''.
Excellent poster about the ineffectiveness and harms of GET for ME/CFS, developed by @Penelope McMillan and presented at a medical Conference about reducing unnecessary treatments.
Poster here Thread here
USA ''Ex-Reporter Prevails In ERISA Suit Against Prudential''.
Judge says Brian Vastag (@B_V) was improperly denied short-term and long-term disability benefits payable under his employer’s health insurance plan.
Article here Thread here
UK Science media centre - CDC responds to false SMC factsheet claim about the reason for the CDC changing its ME/CFS treatment advice, and the SMC changes its factsheet.
Thread here
................................................................
In the media
ABC Australia 20 minute Radio segment: Mark Guthridge, researcher & Mark Donohoe, GP, spoke on ME research and treatment including harm done by GET/CBT.
Audio link here Thread here
The Times (UK) Letter about the lack of biomedical research into ME/CFS by Robert Saunders (@Robert 1973).
Letter here Thread here
The New Yorker ''Memoirs of Disease and Disbelief'' by Lidija Haas.
Reviews and discusses books by Porochista Khakpour, Julie Rehmeyer, Maya Dusenbery and Jen Brea in Unrest in a thoughtful article about the experiences of people with difficult to diagnose conditions like Lyme and ME/CFS.
Article here Thread here
.................................................................
Podcasts, blogs, articles
The ME Show Episode 4 is now available. @Gary Burgess interviews Jane Colby of TYMES trust, the support group for children and young people with ME.
Links for podcast here Thread here
Trial by Error by David Tuller
''NICE’s Consideration of the Lightning Process''
Includes an e-mail sent to two key members of the NICE guidance executive.
Article here Thread here
''My 2011 NY Times Exchange With the PACE PIs''
Discusses the problem with using patients diagnosed using the Oxford definition as source of evidence for ME/CFS using different definitions.
Article here Thread here
Jax Labs ME/CFS patient advocate spotlight interview with Alan Gurwitt, MD, a retired psychiatrist and advocate who has had mild ME for 30 years.
Article here Thread here
ME/CFS Research Review by Simon McGrath
'' A plan to replicate Mark Davis’s remarkable findings of immune activation in ME/CFS'' . Discusses the planned PhD studentship project on T-cells in ME/CFS under the supervision of @Chris Ponting.
Article here Thread here
What Doctors Don't Tell You ''ME: the cure that went away'' by Bryan Hubbard.
''Chronic fatigue and ME could be dramatically improved with exercise and therapy, a landmark study discovered. But it was bad science, and the cure was never there.''
Article here Thread here
Occupy ME blog by Jennie Spotila.
''The NIH Pilot Program: What We Can Do''
Blog here Thread here
''Talk To FDA About Chronic Pain''
Article here Thread here
Chronic Illness Inclusion Project ''It’s not ME, it’s you – can the chronically ill embrace the social model?'' by Leonora Gunn.
Article here Thread here
...................................................................
Reports of meetings
MEA ''NICE ME/CFS Clinical Guideline: Summary Report from Scoping Workshop by Dr Charles Shepherd | 30 May 2018''
Detailed report on the scoping meeting held last week. Next step, written feedback from stakeholders. MEA will shortly be consulting its members.
Article here Thread here
UK Forward ME Group minutes from meeting 1st May 2018.
Minutes here Thread here
.................................................................
Biomedical Research
Plos One ''Deconstructing post-exertional malaise in ME / CFS: A patient-centered, cross-sectional survey'' by Chu et al.
Detailed study of PEM in 150 patients diagnosed with Fukuda criteria. Makes clear the difference between exercise intolerance leading to fatigue and pain in people who don't have ME/CFS, and the multiple symptoms of PEM in ME/CFS.
Paper here Thread here
Biological Psychology ''Cortical hypoactivation during resting EEG suggests central nervous system pathology in patients with chronic fatigue syndrome'' by Jason, Montoya et al
Paper here Thread here
Workwell Foundation Conference Poster Presentation ''Comparing Post-Exertional Symptoms Following Serial Exercise Tests'' by Van Ness, Mateo et al. Shows greater range, severity and duration of symptoms following 2 day CPET in ME/CFS than in sedentary healthy controls.
Poster here Thread here
Experimental Brain Research ''Structural brain changes versus self-report: machine-learning classification of CFS patients'' by Staud et al.
Paper here Thread here
Hormones and Behaviour ''Hair and salivary cortisol in a cohort of women with CFS'' by Roerink et al.
Marginal non-significant differences found.
Paper here Thread here
The Journal of Pediatrics ''Two-Year Follow-Up of Impaired Range of Motion in CFS'' by Rowe et al.
Paper here Thread here
.................................................................
Biomedical research review
SMCI Webinar: ''Hot Areas in ME/CFS Research'' by Dr Komaroff, long term ME/CFS researcher and doctor from Harvard Medical School, 24 May 2018.
Clear presentation of latest research findings from all over the world.
Now available on YouTube.
Video here Thread here
...............................................................
Coming events
Solve ME/CFS Initiative Webinar: "Crossroad of the immune response and the microbiome: Impact on ME/CFS" with Derya Unutmaz, Thurs 28th June
Thread here
Northern Ireland Conference Hope 4 ME & Fibro Northern Ireland annual conference, Monday 17th September 2018. Keynote speaker Dr Jose Montoya.
Thread here
Canada Opera Mariposa ME/FM Awareness raising and fundraising show, Vancouver June 6th.
Thread here
...............................................................
PDF version here
News
UK IiMER 13th Invest in ME Research International ME Conference was held on 1st June, following a 2 day research colloquium.
Thread here
UK MEA article: ''The ME Association and Press Coverage of Merryn Crofts Inquest'' by Dr Charles Shepherd. Describes MEA involvement in the coverage, publishes the press release, and discusses the wider implications.
Article here Thread here
Australia ME Action article: ''Who is advising the Australian government on ME and CFS research and treatment guidelines?'' by Sasha Nimmo. Includes details of appointees to the NHMRC ME/CFS Advisory committee.
Article here Thread here
Australia ''Conference Poster: Consumers Choosing Wisely. GET for ME/CFS, a case study''.
Excellent poster about the ineffectiveness and harms of GET for ME/CFS, developed by @Penelope McMillan and presented at a medical Conference about reducing unnecessary treatments.
Poster here Thread here
USA ''Ex-Reporter Prevails In ERISA Suit Against Prudential''.
Judge says Brian Vastag (@B_V) was improperly denied short-term and long-term disability benefits payable under his employer’s health insurance plan.
Article here Thread here
UK Science media centre - CDC responds to false SMC factsheet claim about the reason for the CDC changing its ME/CFS treatment advice, and the SMC changes its factsheet.
Thread here
................................................................
In the media
ABC Australia 20 minute Radio segment: Mark Guthridge, researcher & Mark Donohoe, GP, spoke on ME research and treatment including harm done by GET/CBT.
Audio link here Thread here
The Times (UK) Letter about the lack of biomedical research into ME/CFS by Robert Saunders (@Robert 1973).
Letter here Thread here
The New Yorker ''Memoirs of Disease and Disbelief'' by Lidija Haas.
Reviews and discusses books by Porochista Khakpour, Julie Rehmeyer, Maya Dusenbery and Jen Brea in Unrest in a thoughtful article about the experiences of people with difficult to diagnose conditions like Lyme and ME/CFS.
Article here Thread here
.................................................................
Podcasts, blogs, articles
The ME Show Episode 4 is now available. @Gary Burgess interviews Jane Colby of TYMES trust, the support group for children and young people with ME.
Links for podcast here Thread here
Trial by Error by David Tuller
''NICE’s Consideration of the Lightning Process''
Includes an e-mail sent to two key members of the NICE guidance executive.
Article here Thread here
''My 2011 NY Times Exchange With the PACE PIs''
Discusses the problem with using patients diagnosed using the Oxford definition as source of evidence for ME/CFS using different definitions.
Article here Thread here
Jax Labs ME/CFS patient advocate spotlight interview with Alan Gurwitt, MD, a retired psychiatrist and advocate who has had mild ME for 30 years.
Article here Thread here
ME/CFS Research Review by Simon McGrath
'' A plan to replicate Mark Davis’s remarkable findings of immune activation in ME/CFS'' . Discusses the planned PhD studentship project on T-cells in ME/CFS under the supervision of @Chris Ponting.
Article here Thread here
What Doctors Don't Tell You ''ME: the cure that went away'' by Bryan Hubbard.
''Chronic fatigue and ME could be dramatically improved with exercise and therapy, a landmark study discovered. But it was bad science, and the cure was never there.''
Article here Thread here
Occupy ME blog by Jennie Spotila.
''The NIH Pilot Program: What We Can Do''
Blog here Thread here
''Talk To FDA About Chronic Pain''
Article here Thread here
Chronic Illness Inclusion Project ''It’s not ME, it’s you – can the chronically ill embrace the social model?'' by Leonora Gunn.
Article here Thread here
...................................................................
Reports of meetings
MEA ''NICE ME/CFS Clinical Guideline: Summary Report from Scoping Workshop by Dr Charles Shepherd | 30 May 2018''
Detailed report on the scoping meeting held last week. Next step, written feedback from stakeholders. MEA will shortly be consulting its members.
Article here Thread here
UK Forward ME Group minutes from meeting 1st May 2018.
Minutes here Thread here
.................................................................
Biomedical Research
Plos One ''Deconstructing post-exertional malaise in ME / CFS: A patient-centered, cross-sectional survey'' by Chu et al.
Detailed study of PEM in 150 patients diagnosed with Fukuda criteria. Makes clear the difference between exercise intolerance leading to fatigue and pain in people who don't have ME/CFS, and the multiple symptoms of PEM in ME/CFS.
Paper here Thread here
Biological Psychology ''Cortical hypoactivation during resting EEG suggests central nervous system pathology in patients with chronic fatigue syndrome'' by Jason, Montoya et al
Paper here Thread here
Workwell Foundation Conference Poster Presentation ''Comparing Post-Exertional Symptoms Following Serial Exercise Tests'' by Van Ness, Mateo et al. Shows greater range, severity and duration of symptoms following 2 day CPET in ME/CFS than in sedentary healthy controls.
Poster here Thread here
Experimental Brain Research ''Structural brain changes versus self-report: machine-learning classification of CFS patients'' by Staud et al.
Paper here Thread here
Hormones and Behaviour ''Hair and salivary cortisol in a cohort of women with CFS'' by Roerink et al.
Marginal non-significant differences found.
Paper here Thread here
The Journal of Pediatrics ''Two-Year Follow-Up of Impaired Range of Motion in CFS'' by Rowe et al.
Paper here Thread here
.................................................................
Biomedical research review
SMCI Webinar: ''Hot Areas in ME/CFS Research'' by Dr Komaroff, long term ME/CFS researcher and doctor from Harvard Medical School, 24 May 2018.
Clear presentation of latest research findings from all over the world.
Now available on YouTube.
Video here Thread here
...............................................................
Coming events
Solve ME/CFS Initiative Webinar: "Crossroad of the immune response and the microbiome: Impact on ME/CFS" with Derya Unutmaz, Thurs 28th June
Thread here
Northern Ireland Conference Hope 4 ME & Fibro Northern Ireland annual conference, Monday 17th September 2018. Keynote speaker Dr Jose Montoya.
Thread here
Canada Opera Mariposa ME/FM Awareness raising and fundraising show, Vancouver June 6th.
Thread here
...............................................................
PDF version here
Last edited: