Purple_Shaman @purple_shaman@qoto.org
ME/CFS x 10 yrs. Oncology doctor.
Battery half empty, glass half full
Joined Nov 2022
@Aileen22 @tomkindlon @mecfs @longcovid
Yes, UK (GB&NI) only I'm afraid.
25,000 genetic profiles for ME/CFS would be amazing. But even 20,000 (which looks more likely) will be massively beneficial once the analysis is done.
ME/CFS is not an inherited disease, but such a huge database will identify genetic similarities between sufferers that could point to what is actually going on.
Purple_Shaman
boosted
@ChrisCPS I hear you Chris!
An eye-opening moment in my coffee life was getting a tour of the Swiss Water Decaf plant, in Burnaby, BC, Canada a while back. Just amazing the process things go through to remove the caffeine while retaining most of the coffee's flavour.
One of the best decafs I've ever had came from Madcap Coffee. They don't always have it in stock tho - very limited.
Purple_Shaman
boosted
Sympathetic article:
Lisburn man with ME urges Northern Ireland people to take part in new study ( #DecodeME ) into condition
"On one day I might be able to meet a friend or go to a hospital appointment, the next day I would be bed bound"
https://www.belfastlive.co.uk/news/health/lisburn-man-urges-northern-ireland-27757804
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
Only a few weeks left to register for one of the biggest studies ever on #mecfs.
Please share DecodeME widely.
Purple_Shaman
boosted
@tomkindlon @chronicillness @spoonies @mecfs @longcovid
“I hope you feel better soon” is answered with “Oh that’s sweet, but I won’t. This is life with chronic illness.”
They need to hear it. They need to know that sometimes you get sick and you NEVER get better. Ever.
Purple_Shaman
boosted
Due to the overwhelmingly positive reaction to our open letter to Cochrane calling on them to withdraw their 2019 review of exercise therapy for 'CFS', we have set up this petition to make it as easy as possible to add your name in support.
Please sign and share.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Purple_Shaman
boosted
? for other disabled folks (esp w ME/CFS): How do you estimate spoons available for the day? Or do you?
I need a better way than “Do things until PEM, then one thing less.” Timeboxing stuff pomodoro style kinda helps but doesn’t factor how much I must:
• move my arms
• sit up
• stand up
• walk
• climb stairs
• lift >5 lbs
• focus mentally
• do emotional work
• travel
• be in crowds
…or combinations of above
ANY resource links, tips, recommendations?
@GwenfarsGarden @mecfs @longcovid I used Visible, but found a cheap smart watch was better because of the constant tracking (activity, heart rate sleep etc.)
I see that 'visible plus' includes a smart watch which would be useful, but I don't know if that's free ..
Good to see this covered in the influential Science journal:
Definitely a step forward in finding the pathway that causes fatigue in ME/CFS.
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.
