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“Altering plans may allow your friend to be included. However, ME/CFS and long COVID are unpredictable, and sometimes even when you change plans to try to include them, on the day, they may be feeling worse than they anticipated and need to cancel at late notice.”
2/
I believe I was the first person to highlight this issue in a formal publication 15 years ago and a number of my papers and letters since then have been about this and related issues
Most of my publications can be read for free here: https://www.researchgate.net/profile/Tom-Kindlon
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“However, with the onslaught of Long COVID, more attention has been given to the devastating impact this disease [ME/CFS] has on quality of life. These patients need more qualified care providers who have the most up-to-date research, care guidelines, and the inquisitiveness to solve difficult medically complex cases."
@longcovid @mecfs #mecfs #cfs #pwme #PwMEs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Interview with Anil van der Zee for severe M.E. Awareness Day 2023
An insightful interview with severe ME sufferer, professional dancer and forum member Anil van der Zee from his bed. He talks about his day-to-day life and raises the needs of severe ME sufferers. Duration: 32 minutes. English subtitles.
#severeme @mecfs #mecfs #cfs #pwme #pwmes #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Germany
A small "mourning walk" took place in Berlin on 8 August to mark Severe ME Day. The participants were dressed in black, with ear protection, sunglasses & held signs. After the walk of 300 metres, there was a lying down demonstration. There were several press reports, even the public news in an evening television programme
https://www.s4me.info/threads/news-from-germany.11006/page-13#post-488825
@mecfs @mecfs_de #mecfs #cfs #pwme #pwmes #cfsme #ChronicFatigueSyndrome
The Times (UK):
“NHS told to stop blaming ME patients for being ill and improve care”
Sean O’Neill: "My daughter Maeve succumbed to ME in her teens and died, aged 27, in 2021 after the illness became severe and totally debilitating. She struggled to get doctors and social workers to understand. And for years I also found it hard to accept and understand her illness."
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #pwme #pwmes #cfs #cfsme
UK #DecodeME
Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.
Spread the word:
https://www.decodeme.org.uk/ways-to-share/
@mecfs #mecfs #pwme #PwMEs #cfs #cfsme #ChronicFatigueSyndrome
Open Medicine Foundation Australia:
"We take immense pride in announcing the gracious gift of $500,000 to Open Medicine Foundation Australia Limited (OMFAL) to fund the initial phase of Dr. Chris Armstrong’s ground-breaking personalized treatment program." The gift is from the McCusker Charitable Foundation.
https://www.omf.ngo/McCusker-gift/
More info:
https://www.omf.ngo/melbourne-mecfs-research/
@mecfs #mecfs #pwme #PwMEs #cfs #MyalgicEncephalomyelitis #myalgice
Canada ICanCME Research Network Funding Announcement
"... a national research network funded by the Canadian Institutes of Health Research (CIHR). .. The ME Stars of Tomorrow Scholarship Program supports the work of promising graduate students who are conducting Myalgic Encephalomyelitis research as part of their masters or doctoral research project."
https://mailchi.mp/de70b9160260/icancme-research-network-funding-announcement_sot-2023
Nature:
Connecting the dots from viral infection to disease
An editorial on the importance of research into viruses as causative agents of disease. "... multi-centre collaborations are needed to enable well-documented, large, longitudinal cohort studies…in order to unravel the complexities of virus-induced diseases, such as #LongCovid and ME/CFS."
@mecfs #cfs #mecfs #pwme #pwmes #cfsme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#MEAction will now host Body Politic’s advocacy work as a project. "As more people with Long COVID begin to be diagnosed with ME, and as Long COVID research opportunities still continue to thrive, this joining of forces is an opportunity that we believe will be very beneficial to us all."
@mecfs @longcovid #longcovid #mecfs #MyalgicEncephalomyelitis #pwme #pwlc #PostCovid #PostCovid19 #cfs #cfsme #PwMEs
“Exhausting the exhausted – how employers & insurers cruelly add to the burden of #LongCovid” (May 2023) by Sam Pearce
Focuses on a man with #PostCovid & #MyalgicEncephalomyelitis.
Insurers hope people will give up
Audio version available
#ChronicFatigueSyndrome #cfs #pwmes #cfsme
#PwME @mecfs @longcovid
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“The review comes with an unusually long list of competing interests; many of its authors have built their careers on the notion that treatment for ME/CFS should be rehabilitative, consisting of physiotherapy, exercise and counseling. These authors receive payments either for providing exercise and counseling ‘treatments’, or for advising government departments or insurance companies that such treatments should be provided”
Thread 🧵
“Prestigious BMJ promotes ME/CFS misinformation” (15th Jul 2023)
“The prestigious British Medical Journal (BMJ) has published an article which profoundly misrepresents the state of scientific knowledge on ME/CFS”
https://mecfs-med-ed.org/2023/07/15/prestigious-bmj-promotes-me-cfs-misinformation/
@mecfs #MyalgicEncephalomyelitis #mecfs #cfs #pwme #PwMEs #ChronicFatigueSyndrome #cfsme
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Translation of a summary for laypeople of the paper:
New research on ME patients' encounters with the services
https://t.ly/G_h-
Here is a translated summary from the team themselves
Discussion
#MEcfs #CFS #MyalgicE #PwME
@mecfs #MyalgicEncephalomyelitis #pwmes
3/
This is from this study that was published in April
"Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway"
Free:
https://journals.sagepub.com/doi/10.1177/13591053231169191
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #MyalgicE #PwMEs @mecfs
🧵
Translation of #MEcfs survey results:
Very negative/Negative/Neutral/Positive/Very positive
Therapies (from the top):
Gammanorm*/Coping course/Psychologist/Low Dose Naltrexone/Physiotherapist/Psychiatrist/Cognitive Therapy/Rehabilitation/Lightning Process/Work training
*Gammanorm = immunoglobulin https://www.medicines.org.uk/emc/product/5658/smpc#gref
@mecfs #mecfs #MyalgicEncephalomyelitis #cfs #pwme #pwmes #ChrooicFatigueSyndrome
1/
From the Open Medicine Foundation:
New Details on OMF Supported ME/CFS Research Projects in Australia: https://www.omf.ngo/melbourne-mecfs-research/
1️⃣Project 1: Personalized treatment trials
2️⃣ Project 2: Cell-based assay platform to assess the effect of drugs on improving function
#MECFS #Longcovid #medicalresearch
===
We have given substantial donations from our research fund to support the OMF over the years
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“The impact on quality of life is not only affecting the individual, sometimes parents give up work to care for children, partners suffer from a huge reduction in normal activities is also a massive impact on finances and their family members' overall quality of life.”
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #PwMEs
10/
Dr. Nina Muirhead:
“Public health authorities have sadly underestimated the impact of ME and severe ME on quality of life and ability to work full time, this will put enormous pressure on the economy particularly if a subset of people with Long COVID have ME.”
