Purple_Shaman @purple_shaman@social.cleverlibre.org
ME/CFS x 10 yrs. Oncology doctor.
Battery half empty, glass half full
Joined Nov 2022
This is unbelievably disappointing. A direct link to thecanary article is here: https://www.thecanary.co/opinion/2023/08/16/me-cfs-nhs-trust-clinical-psychologist/
Purple_Shaman
boosted
Using #Mastodon
and the #Fediverse is an act of rebellion in itself.
By being here,
you are contributing to grow an alternative system that is led by the people and for the people, not for profits.
By being here,
you are encouraging a solution to a deteriorating social climate that thrives on outrage and monetization of hate.
By being here,
you are participating to the development of a new system that can slowly build a better world.
Thank you for being here 💚
Disappointing to see discussion of GET and CBT. I see the primary investigator is a psychiatrist.
In their defence, the trial was granted ethical approval in 2016 and could well have been in development for a year or so before this. I suspect they regret choosing a topic that included GET/CBT to test their online teaching.
The recently published paper has switched to using the term Fatigue Syndromes rather than CFS. I've only read the abstract, but perhaps this shows some awareness about the change in views on GET/CBT?
Purple_Shaman
boosted
Seeing a lot of love for this
The Atlantic
What if your body forced you to stop?
People suffering from #longCOVID, ME/#CFS, & other energy-limiting chronic illnesses, experience #fatigue that is different from everyday tiredness—& they’re often treated not just with disbelief but with contempt. *Ed Yong* speaks with Hanna Rosin on why so many experience indifference to a debilitating condition
Podcast & transcript
https://shorturl.at/hxSTW
@longcovid @mecfs #mecfs
#spoonie
@s4me Having a good questionnaire is important, particularly one that captures PEM. It would be great if the same questionnaire was then used throughout ME/CFS research to assess and possibly compare different treatments.
However, questionnaires will always be at risk of bias from subjective reporting of symptoms, so they will still need to be paired with activity tracking by step counters/pulse monitors etc.
Purple_Shaman
boosted
2/
New from France:
Consequences of sarcolemma fatigue on maximal muscle strength production in patients with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome
Free:
https://clinbiomech.com/article/S0268-0033(23)00186-9/fulltext
"post-exercise sarcolemma fatigue...could be the cause of muscle failure"
Purple_Shaman
boosted
From MEAction UK:
"Response to the Guardian article 11 July 2023"
"MEAction UK was shocked to read the article ‘ME/CFS guidance that discourages exercise is flawed, say researchers’ published on 11th July 2023. The article covers an attack on the 2021 NICE guideline for ME/CFS by a group of researchers who have focused on treating ME with their pet therapies."
Read more here: https://www.meaction.net/2023/07/11/meaction-uks-response-to-the-guardian-article-11-july-2023/
Purple_Shaman
boosted
Just posted this on the bird site - what is the last straw people need to leave twitter completely? I found my limit. I'm leaving.
For me, paying nazi, misogynistic 'influencers' is too far. I've long been passive on Twitter, but used it to distribute content. I can't do it anymore. The values conflict is too much.
I'd love it if some academics took a stand with me. I'm going to delete my (50K+) follower account on the 13th of August. I'm staying for a month to do a count down and encourage others to #DeleteTwitter.
I don't have a recommendation of where is best to go. Anywhere is better than Twitter and its ocean of hate. Appreciate a boost to build a bit of momentum for this protest attempt
Purple_Shaman
boosted
Well done to Dr Charles Shepherd of the ME Association for putting in perspective the new commentary by CBT and graded exercise therapy proponents, individuals who have lots of competing interests and aren't necessarily focused on what's best for patients.
From "‘Shortcomings' identified in chronic fatigue syndrome guidance":
https://www.irishnews.com/news/uknews/2023/07/11/news/_shortcomings_identified_in_chronic_fatigue_syndrome_guidance-3426398
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @mecfs
A well worded blog explaining why studies that use self-reported measures of fatigue are prone to bias.
Purple_Shaman
boosted
3/
Fig. 3. Unifying bio-pathological model for post-COVID-19 syndromes and ME/CFS, and implications of chronic inflammation for plasmalogens levels.
From:
https://www.sciencedirect.com/science/article/pii/S0361923023001272
#MEcfs #CFS #MyalgicE #PwME #CFSME #LongCovid #Covidlonghaulers #PwLC #PostCovidSyndrome #postcovid
Purple_Shaman
boosted
"Recommended ME/CFS resources for medical educators" from @MECFSMedEd
https://mecfsmeded.files.wordpress.com/2023/04/mecfs-learning-resources.pdf
A collection of papers, articles and audiovisual material.
#MedEd #MedicalEducation #MedMastodon #MedicalStudents #MLA #pwME #MyalgicEncephalomyelitis @mecfs
Purple_Shaman
boosted
We've written to the Medical Schools Council urging them to lead the development of excellent ME/CFS training for undergrad med students across the UK, and to openly share their plans with patient community. #MedEd #MedicalEducation #MedMastodon #MedicalStudents #MLA #pwME #MyalgicEncephalomyelitis #longCovid
https://mecfs-med-ed.org/2023/07/01/an-open-letter-to-the-medical-schools-council/
Purple_Shaman
boosted
Twitter: I follow news and political giants, but all I see are bad people and arguments
Bluesky: I follow 10% of my old friends who were able to get out of twitter in time and sometimes it works
Threads: I follow my friends but I can’t see them through the algorithm of businesses
Mastodon: oh look a beekeeper in the Netherlands
Purple_Shaman
boosted
8/
“I think #DecodeME is a fantastic example of patients and scientists collaborating to enable biomedical research into ME happen at scale, I am very hopeful that it will generate some promising results that point towards which pathways may be involved in this disease.“
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme
@CyruxiME How you're feeling is also very important - in many ways more important than any x-ray result. I hope things improve for you 
@CyruxiME Yes, duodenum seems most likely. The tip is quite a bit below the gastric air bubble - you'd have to have quite a long stomach for it to still be stomach at that point. However, everybody is different. A previous scan would give a clue to your particular shape, but even then stomachs have a habit of changing depending on what's inside them and what way you've been lying....
@CyruxiME I guess it's also possible that the tube is in two loops of bowl, one running exactly behind the other, but that would be quite a coincidence. A repeat x-ray might be helpful if things are still bad.
@CyruxiME @CyruxiME Hi, I'm sorry you're going through this - it doesn't sound nice at all. The tube looks like it might have turned back on itself in the most recent x-ray but I'm not sure it's quite back into the stomach. Could still be enough to cause your symptoms to get worse of course. (I'm an NHS doctor in England with ME/CFS)
I really hope things get sorted out for you.
