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An open letter to Anna Gregorowski, chair of BACME (British Association of Clinicians in ME/CFS), from Members of the ME community, facilitated by the Chronic Collaboration.
It highlights failures of BACME to fully update their materials to comply with NICE guidelines, and failure of clinics run by members of BACME to move away from harmful past practices.
"Moreover, current cases of the NHS neglecting people living with very severe ME are being exacerbated due to the NHS trusts claiming they are following BACME guidance – not NICE guidelines."
The letter is available for added signatures and comments.
The august CDC in the US have redesigned their ME/CFS section [which contains sections for patients/general public & healthcare providers including a section from medical students].
In this study, having previously received an functional somatic syndrome diagnosis such as CFS was associated with female sex and poor health-related quality of life. No association was found for health anxiety, kinesiophobia and physical activity.
Dr Audrey Ryback (who is funded by Action for ME) and Charlie Hillier plan to replicate with a larger sample work by Fluge and Mella who found something in serum that changed the behaviour of healthy lab-grown muscle cells.
They will use the Seahorse anlayser to look at glycolysis and mitochondrial respiration. Using a stain and microsocopy, they will look for the mitochondrial fragmentation that Prusty saw, and will also investigate how serum might affect cell function.
Heute mal wieder im Büro gewesen, wo der soziale Druck - ausgesprochen oder unausgesprochen - auf mich immer am stärksten wirkt. Übertreibe ich nicht vielleicht doch mit der Maskenkonsequenz?
Und dann kommt man nach Hause und liest das. 🤯
"Bis zum Jahr 2033 werden voraussichtlich eine Milliarde Menschen an Long Covid leiden – die meisten davon in den ökonomisch aktiven Altersgruppen."
Trial By Error Reporting on ME, ME/CFS, #longCovid, & "Medically Unexplained Symptoms"
A crowdfunding for David Tuller DrPH's important work on "debunking awful research". This will secure his academic position at Berkeley until December 31, 2024
Good to see:
"For the latter [ME/CFS], overload (e.g. through sports or activating rehabilitation measures) leads to a deterioration of the condition. , while patients with depression or burnout usually benefit from activating measures. For ME/CFS sufferers, "pacing" instead of activation is therefore at the center of disease management."
YouTuber and behavioural scientist Pete Judo presents the infamous #PACEtrial which he describes as "what is possibly the worst medical trial in modern history. (contd)”
“(Contd) Worst in its bizarre practices, worst in terms of its potentially fraudulent reporting of results, and worst of all its potential harm it has caused to a very vulnerable group of people".
"Anil was a dancer before he got sick. Now he makes art through his images and words. I am constantly amazed at how active and engaged he manages to be with his phone as his instrument. Here is The Prison of M.E., a haunting video he posted for World ME Awareness Day on Sunday, May 12th (two days ago), about life as a severe patient."
Wenn ich jemandem erzähle, dass ich den Aufzug nehmen muss, auch wenn‘s nur eine Etage ist, bekomme ich sehr häufig die Antwort: „seit der letzten Corona-Infektion kann ich nach der Arbeit nur noch liegen“, oder „ich bin zwar gesund, aber war seitdem nicht mehr joggen“.
Nur mal so zur Info an die Ärzte, die „sowas ja noch nie gehört haben! Das sind doch nur Faulenzer, die in Frührente wollen.“
After a week of feeling crappy, my ME/CFS wasn’t too bad today. However, I decided to take a nap just to recharge my batteries. When I awoke my dizziness and brain fog was much, much worse. It’s almost like my brain didn’t completely wake up and I’m permanentliy groggy. This ever happen to others of you with #mecfs?
@btschumy@mecfs Unrefreshing sleep is a common symptom anyway but today maybe the crash was still coming on when you went down for a nap?
There’s always a lag for me between aggravating event (standing too long, sitting up too long, too much exertion or elevated heart rate ) and onset of PEM crash, usually a day-ish. But so often it catches me up short and I’m like wtf did I do?
The hardest thing about #MECFS is gauging how I’m doing. Either I’m in pain and fog, or not. Argh!
@LLS@mecfs It could be I was due for a crash. I’ve been yo-yoing for the past week. But I didn’t do much yesterday and I felt good before the nap. Sure seems like the nap caused it. It makes me wonder if some of the “unrefreshing sleep” and brain fog are just the brain not coming out of sleep correctly. That would be an autonomic nervous system thing.
A thread for eight #MECFS, #LongCovid and related research papers from w/c 6th May 2024.
Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.
Sharing information about the Mayo ME/CFS document (Diagnosis and Management of ME/CFS) - and the associated CME (Continuing Medical Education) - is a great way to immediately improve patient care for people with ME/CFS.
Remember, roughly half of Long Covid patients meet the ME/CFS diagnostic criteria.
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