tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New:
The most severely ill patients with ME/CFS in Denmark

Free full text:
https://www.tandfonline.com/doi/full/10.1080/27707571.2024.2359958

Looks like a sympathetic exploration of an important but neglected topic


@mecfs @severeme

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Long Covid Advocacy 💙@LongCovidAdvoc:

🌟Stunning video by @PeteJudo
on the PACE trial
'This $8 Million Medical Trial is a Joke'
⚡Worst medical trial in modern history
⚡Worst in its bizarre practices
⚡Worst in potentially fraudulent results
⚡Worst in potential harm to patients

Full 📺👇
https://www.youtube.com/watch?v=bzh8pT-g9v0

@mecfs

video/mp4

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Links to:
"Australians Abandoned by Healthcare, Sentenced to “Living Death”: Outdated health guidelines and medical fallacies have left thousands of patients neglected and marginalised."

https://amandafrancey.medium.com/australians-abandoned-by-healthcare-sentenced-to-living-death-2d0097184091

Image from the AMMES June e-newsletter

#MEcfs #CFS #PwME @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Extract from comments by Dr Binita Kane in this popular Guardian article today:

"‘I could bench-press 100kg. Now, I can’t walk’: Lucy’s life with #longCovid ."
"Before the pandemic, Lucy Keighley ran a gym, worked as a personal trainer and went on gruelling, exhilarating runs. But after three and a half years of illness, she isn’t sure she will ever recover"

https://www.theguardian.com/society/article/2024/jun/05/i-could-bench-press-100kg-now-i-cant-walk-lucys-life-with-long-covid

@mecfs
#MEcfs #CFS #PwME
@longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PASC #COVIDBrain

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK:

ME Research UK is delighted to announce that we have awarded funding to Prof. François Jérôme Authier and colleagues for a new study assessing neurocognitive impairment in people with ME/CFS. https://bit.ly/3yNR3Uq

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK:
Our monthly e-newsletter keeps supporters up-to-date with ME Research UK's activities and research commentary. View May’s e-newsletter online ( https://bit.ly/3VlK91H ) and sign up today - https://rb.gy/0seeyj

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Systematic review of fatigue severity in ME/CFS patients: insights from randomized controlled trials

Free:
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-024-05349-7

My guess is that a lot of people severely affected by ME/CFS don't feel able to take part in clinical trials

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Read the latest (US) National Institute of Neurological Disorders and Stroke [NINDS] Director’s Message from Dr. Walter Koroshetz: Advancing Research on ME/CFS.

https://www.ninds.nih.gov/news-events/directors-messages/all-directors-messages/advancing-research-mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

3/
Different diagnostic criteria available for ME/CFS with a concise history of timelines.

From:
#MyalgicEncephalomyelitis / #ChronicFatigueSyndrome: the biology of a neglected disease

Free:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1386607/full

#MEcfs #CFS #PwME
@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

4/
Infectious pathogens thought to promote the development of ME/CFS including viruses, bacteria, fungi, and parasites

From:
#MyalgicEncephalomyelitis / #ChronicFatigueSyndrome: the biology of a neglected disease

Free:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1386607/full

#MEcfs #CFS #PwME
@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK

Part 2 highlights from the 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID, including-

  • History of ME/CFS

  • Clinical assessment of ME/CFS and

  • Immune and metabolic abnormalities

Read: https://www.meresearch.org.uk/1st-international-conference-on-clinical-and-scientific-advances-in-me-cfs-and-long-covid-lisbon-highlights-part-2/

@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
The Untapped Power of “We Don't Know”: Epistemological Humility in the Era of

https://journals.sagepub.com/doi/10.1177/23743735241252475

"There are several arguments for how saying “We don’t know” might benefit patients.

@longcovid
@chronicillness
@spoonies @mecfs

1/

tomkindlon, to punk
@tomkindlon@disabled.social avatar

(pay-walled)
"Is it time to move beyond blood pressure & heart rate during head-up tilt testing?"
https://www.springermedizin.de/is-it-time-to-move-beyond-blood-pressure-and-heart-rate-during-h/27098904

The authors emphasise orthostatic changes in cerebral blood flow, electrocortical activity, heart rate variability, or oxygen extraction, among other physiological changes, can occur in the presence of a completely normal blood pressure or heart rate response on head-up tilt table testing

@pots @longcovid
@mecfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

3/
Video:
Symptom Management and Patient Empowerment Through The Long Covid Wearable Study (58 minutes)

https://www.youtube.com/watch?v=3E9wPliUwG4

@pots @mecfs @longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

"Tin Foil Hat Territory? The Gupta Program, the Lightning Process and the BPS [biopsychosocial] in #LongCovid and ME: How brain retraining therapies intersect with the biopsychosocial model"

https://longcovidadvocacy.substack.com/p/tin-foil-hat-territory-the-gupta

Hashtags:
@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

tomkindlon,
@tomkindlon@disabled.social avatar

2/

Description from the Science for ME @s4me update:

UK Advertising Standards have upheld complaints against Gupta and LP founder Parker for making unfounded claims, yet they continue to dupe media and clinicians into supporting their programs.

#MEcfs #CFS #PwME #LongCovid #PwLC
@longcovid @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

3/

"This excellent article highlights the similarities of these methods with the unevidenced 'biopsychosocial' approach to ME/CFS which has dominated research and treatments for years and is now infiltrating Long Covid, including in NHS clinics."

#MEcfs #CFS #PwME #postcovid #postcovid19 #LC
@LongCovidAdvoc @longcovid @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

4/

"We need to be vigilant and educated to spot this charlatanry. We need therapeutic treatments that actually work and stop gaslighting those with post-acute viral disease."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain

@LongCovidAdvoc @longcovid @mecfs

tomkindlon, to mecfs
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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Responding to a BBC programme, Dr Edzard Ernst highlights data showing many are harmed by the Lighting Process and the lack of evidence for claims made.

He concludes: "Does anyone think that LP or its promoters are remotely serious?"

https://edzardernst.com/2024/05/almost-anyone-can-recover-from-long-covid-just-pay-a-lot-of-money-for-the-lightning-process-no-please-dont-i-was-joking/

@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

(UK)
"Government funders of research in ME/CFS, academic researchers and persons or representatives of persons/groups with lived experience of ME/CFS came together to develop a Researcher Toolkit"

https://www.cso.scot.nhs.uk/toolkit-now-available-to-help-me-cfs-researchers/

@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

2/
"It [the researcher toolkit] provides an important overview of: UK government research funding opportunities; guides to embedding patient and public involvement; resources on developing high quality proposals and more"

#MEcfs #CFS #PwME @mecfs

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