screenshot of abstract
UK research funded by ME Association
Testing a Personalised Dysautonomia Management Protocol in Patients with Orthostatic Intolerance and a Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or Long COVID
Free:
www.mdpi.com/2077-0383/15...
#MEcfs #LongCovid #PwME #ME #MyalgicE #POTS
Regarding below - Looks like there’s speculation on the cyber bullying claim 😬, see comments below my posts. I’m going to leave the post up, as the comments are really helpful, but I guess we have to await further updates before we know what has really happened.
#pwME #pwLC
Leven met ME/cvs - het verhaal van Maria. Maria: ‘Tegenwoordig ben ik grotendeels aan huis gebonden en kan gemiddeld één keer per week een afspraak buitenshuis hebben.’
𝗟𝗲𝘃𝗲𝗻 𝗺𝗲𝘁 𝗠𝗘/𝗰𝘃𝘀 - 𝗵𝗲𝘁 𝘃𝗲𝗿𝗵𝗮𝗮𝗹 𝘃𝗮𝗻 𝗠𝗮𝗿𝗶𝗮
Hoe is het om al decennialang ziek te zijn? Maria vertelt hoe zij ruim 30 jaar geleden ziek werd.
Hoe lang ben jij al ziek?
me-cvsvereniging.nl/leven-met-me...
#mecvs #pwme #me #mecvsvereniging #lotgenoten #lotgenotencontact #contact #erkenning
Migraine. Burning nerves. Can’t be upright. Moving feels like fighting double gravity. This is a normal Sunday with Long COVID and ME/CFS. There is nothing inspiring about it. It just hurts.
#LongCOVID #MECFS #ChronicIllness #InvisibleIllness #PwME
ɅTRI-ME CLINICAL TRIAL SEEKING PARTICIPANTS Experiencing Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome? Researchers at Deakin, La Trobe and Swinburne Universities are investigating if a potential new treatment is effective in treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). To find out more, please reach out via: Phone: 0482 869 599 Email: tri-me@deakin.edu.au Website: Scan the QR code below *IMPACT TRIALS will DEAKIN UNIVERSITY Ethics Approval Number: Barwon Health HREC: 23/196
(Australia)
Researchers at Deakin University are testing a potential new treatment for ME/CFS and are looking for participants to join their clinical trial
COMPLETE THE EXPRESSION OF INTEREST
redcap.deakin.edu.au/surveys/?s=4...
#MEcfs #PwME
Deep in a #PEM crash at the moment. Not upright, barely eating, flat on my back resting and recovering. Will this ever get better?
#LongCOVID #MECFS #PwME
From @onelife_livedwell on IG:
The PACE trial shaped an entire research paradigm, but the methodology tells a more complicated story. This is what happens when lived experience and research conclusions don’t align and why how we define things matters so much. #mecfs #longcovid #pwme #cfs
Good news: the patient won. On the negative side of things, the ruling says questionable things. See discussion here:
www.s4me.info/threads/norw...
#mecfs #pwme #CFS
Thanks to the ME Global Chronicle team for including info on the Dr Bansal tour in the latest edition:
meglobalchronicle.wordpress.com/2026/03/23/n...
Full table of contents:
meglobalchronicle.wordpress.com/2026/03/25/t...
#MEcfs #PwME #ME
Irish ME/CFS Association logo Dublin 15 informal meet-up (March 2026) photo of 4 people around a table
Tom Kindlon @tomkindlon.bsky.social : I was happy with how it went. As usual, after the carvery closed at 3pm, we had the room to ourselves.
#MEcfs #PwME
Huge thanks to Claire @longcovidadvoc.com for this excellent & hugely important @quietriotpod.bsky.social episode on #LongCovid where #ME is also frequently mentioned
Big thanks also to @mrkennycampbell.bsky.social for his interest & understanding, we need more journalists like him
#pwME
We are very sorry but due to incessant cyberbullying Dr Taylor is no longer working at Jura health. We are aware of a few ex-patients who are spreading misinformation about the service. Due to the intensity of the harassment, Dr Taylor has not been able to run a service normally for the past 6 weeks. As Dr Taylor was given no notice of the clinic closing, she does need some time to wrap everything up. Therefore, if you are waiting on a report, please do not listen to anyone online who says you will not get one. No-one will be left without a letter. Dr Taylor cares deeply about her patients and would not leave them without everything they are due. Additionally, anyone who has paid for an appointment will of course be given a refund. This is not the case and just another way of targeting Dr Taylor. We are still answering emails- please be patient with us as there are only 2 of us and lots of patients worried about their ongoing care. We are also calling patients, but again it will take time to do this. Dr Taylor has dedicated her career to helping patients unseen by a system that does not understand their disease. Please remember the Dr Taylor that you know and not the fictional one being described online. She would never desert her patients. It has been devastating for her to watch a few people destroy a service that has helped so many. Most upsetting is that Dr Taylor cannot prescribe medication without a clinic. She would have avoided this situation if at all possible, and is aware that many people rely on the medication she prescribes. She has absolutely no control over this. She can only suggest asking your GP or another private doctor if they are willing to prescribe your medication. Contrary to what is being said, Police Scotland are involved due to threats made to Dr Taylor, the host clinic and the sheer scale of the harassment. The same people who claim what they are doing is free speech are deleting any positive comments made about Dr Taylor. That alone spea…
Current post on @drclairetaylor.bsky.social website.
#pwME #pwLC
I don't know if you're aware of this, if you have a disabling condition the NHS fails to support, and rely on private consultants for your PIP reviews: you need to be aware of this & make sure others are, bc we're quite likely to need to get together & take them to court.
#mecfs #pwme #LongCovid
I'm one of many people who'd be on this march for
Love, Unity & Hope, & against racism & the far-right today if I wasn't so sick, in my case with #ME
I can hear the🚁s from my bed
Grateful to everyone who's there today💙
#DisabledPeopleAgainstFascism
#TogetherAlliance
#pwME
This really is very good. If you've got #LongCovid #mecfs #pwme you'll recognise every word, and may well find it helpful to point family and friends at it so they understand why you only manage to see them once a year for half an hour.
"El silencio solitario y sombrío de un mundo #ME
Propósito: sobrevivir, a pesar de los esfuerzos de muchos en el poder por aplastarnos.
Somos un estorbo. En un mundo que simplemente valora la productividad, no podemos producir.
Esperamos, con una esperanza menguante, un cambio"
#MEcfs
#EMsfc
#pwME
(Australia)
The Medical Republic: "Chronic Fatigue Over Chronic Fatigue Reform"
www.medicalrepublic.com.au/chronic-fati...
Screenshot from Emerge Australia newsletter
#MEcfs #PwME
sometimes i think I'm not so very disabled because look at what i can do that other #pwME can't! and then i get a cold awakening. oh no i can't do those things without making "I'm dying" noises, so uh.
(not actually dying, just the moaning nnnngg sounds i heard in nursing homes and hospital wards)
well i was right last week about asking my dad to do my hair. i just tried washing it sink the sink, exactly like last week, and feel so much worse than then. it's the holding my arms above my head, and feet on the ground. #pwME #POTS
“the epidemic petered out through the use of airborne precautions”
#DutyOfCare
#CleanAir #Ventilation
#LongCovid #LongCovidKids
#MEcfs #pwME #Respiators
Having #ME/CFS means pushing up an invisible - to others - boulder, day in, day out while the incline’s steepness changes and your body central immuno-metabolic system malfunctions and punishes you for every simple life activity.
#PEM≠fatigue #PEM #pwME #ICDG93.3 #ICDG93.32 #ICD8E49
woke from my nap. time to nap again. #pwME
I liked this definition of rest,
"Release productivity, guilt & the pressure to 'use time well'.... rest with no stimulation, no goals & no pressure to use the time for any 'self improvement' "
🛏️😴☮️
#pwME
Sometimes I daydream about being well enough to exercise.
It’s the boring things I’m missing out on too.
#pwME #LC
Vraag
Er is een team WMO Advocaten die landelijk werkt en goed werk verricht voor mensen met ME.
Er ligt mij bij WMO Team Haarlem maar dan kom ik op de gemeente site uit bij de ambtenaren en dat is niet de bedoeling.
Wie weet meer?
Repost = 🫶🏼
#pwME
#ME
3 Conclusion This short analysis shows that there are many issues with the meta-analysis by Kolala et al. (1) and the studies in it. The meta-analysis was set up to examine whether non-protocol-based CBT was effective for ME/CFS in studies that did not use the Oxford criteria. Nevertheless, two of the included studies used these criteria, and none of the included studies examined non-protocol-based CBT. Moreover, PEM, the main characteristic of the disease, was not required for diagnosis in any of the included studies. Kolala et al. concluded that CBT was not effective, but then used two post-hoc analyses to state that individual face-to-face CBT was effective for fatigue and that self-directed CBT was effective for physical functioning. However, even after those treatments, patients remained severely ill and severely disabled. Also, quality of life, which was one of the two objectives according to the registration of the meta-analysis, did not improve. Different forms of CBT did not lead to objective improvement, and an extensive review of the literature found that CBT has a negative instead of a positive effect on work and illness benefit status (30). Only one study was deemed to be high risk of bias by Kolala et al. (1). Nevertheless, all studies were non-blinded studies that relied on subjective primary outcomes. Ten of the 12 studies used passive control groups, and a systematic review by Fordham et al. (25) found that the effect size of CBT is trivial if studies use an active control group instead of a passive control group. Adherence to treatment was bad, dropout was high, and studies used selective reporting of objective outcomes. Consequently, the risk of bias in the included studies was high. In conclusion, our analysis confirms the conclusion by NICE (3) that the quality of CBT studies is (very) low and that CBT, irrespective of the form that is used, is not an effective treatment for ME/CFS.
New:
Well done yet again to Mark Vink @huisarts-vink.bsky.social who is bedbound with ME)
"Commentary: Cognitive behavioural therapy for the treatment of chronic fatigue syndrome in adults: a short analysis of the meta-analysis"
www.frontiersin.org/journals/psy...
#MEcfs #PwME
Parents and the few partners of #pwME who do not NOW conform to the old orthodoxy - promoted by BBC Radio 4 Today & the Guardian - are persecuted daily, as I type, through statutory safeguarding proceedings: for caring.
It's how Maeve, & countless others die. Please ACT
@sharonhodgsonmp.bsky.social
#NESVOID,
#mecfs, #cfs, #MEScience, #ME/CFS, #pwME, #MEeps, #MEAwareness, #PostExertionalMalaise, #MyalgicE, #SevereME,
#MillionsMissin
So I took 2x longer to come out of anesthesia &my blood pressure & oxygen kept setting off the alarms so they had to keep monitoring & giving me extra fluids much longer than normal.
Now I just want to eat something!
(Still homeless, pls help: linktr.ee/EthyricalArt...)
#chronicillness #pwME #pwD
Protesters lie on the ground outside the White House holding signs. Text above: #MEAction Protest Guide Available. Text below: Part 1: For people who are planning a protest/activism to include people with ME Part 2: For those planning to attend an in-person protest that have complex chronic illness
REMINDER!
#MEAction has a Protest Guide for those with ME or other energy-limiting chronic disease.
Find it here: https://ow.ly/toH750Yzlhj
#pwME #MECFS #ChronicIllness #protest #spoonie #disability
