Discover and read the best of Twitter Threads about #myalgice

Most recents (24)

This week, @scotgovhealth published findings from an analysis of surveys issued to NHS Health Boards in Autumn 2022, to understand existing support for #pwME (or lack of, as we would argue) and implementation of the 2021 NICE guideline.

Thread 🧵 [1/4]…
Pleased to see the publication of the report, & the acknowledgement that the survey was a direct result of #MEAction Scotland's meeting with the then Cabinet Secretary for Health, @HumzaYousaf.

We'll be calling on @MathesonMichael & @jenni_minto to take this work forward. [2/4]
Disappointing to see that 4 Health Boards chose not to respond - @NHSHighland, the largest Board geographically, @NHS_Lothian, one of few identified as having a specific support pathway, @NHSaaa & @NHSGrampian. Also, not all of the 10 who did respond answered all questions.
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Seeking #pwME (pre-COVID w/ or wo/ viral trigger OR COVID-triggered) for a £ online questionnaire examining medical stigma & social media use. Info below, direct questionnaire link & unroll @ end of 🧵. Please RT unrolled 🧵#MECFS #myalgicE #LongCovid #pwLC #NEISVoid(1/18)
Compensation: £15 Amazon voucher for full completion (emailed to you) with partial compensation available (2/18)
Eligibility criteria: a) 18 years+, b) View &/or engage with social media content posted by &/or about ME/CFS &/or Long-COVID at least weekly, c) Currently reside in/received diagnosis, & most or all care in UK (3/18)
Read 19 tweets
I'm so tired of being told : you need to change doctors, find someone who will listen to me etc. Do you know know what it's like in reality ?
First of all. There's no one available. They don't take new patients. Appointments are in months or years. Second money. Third if you
have severe mecfs or very severe you can't go and just find a new doctor. 4. i did that for years. No one listened. No one. Or if one did they had no Idea what to do or put me in danger or sent me to other doctors who treated me like not a human. 5. Each travel to another apptmt
undergoing painful exams being gaslit for years and treated like i wasn't sick it was not enough my pain concerns and words never mattered. 6. The crashes after each apptmt. Physical pain. Suffering. Until being bedbound for weeks and months. 7. The mental toll of all of this and
Read 24 tweets
📢 Today is #WorldMEDay, a day dedicated to learning about, raising awareness of, and campaigning around #MECFS.

This year, the @WorldMEAlliance campaign aims to ensure the harmful effect of pushing harder is the first thing that comes to mind when someone hears about M.E. Quote from Sonya Chowdhury:...
For #pwME, PEM can be a devastating consequence of trying to engage with the world, significantly limiting their ability to participate in daily life. The impact can be so severe for some that it can result in a loss of independence, requiring them to receive full-time care.
It's now estimated that 17-30M people worldwide live with M.E., but it's believed to have doubled since the #COVID19 pandemic began. Shockingly, there are now 65M people living with #LongCOVID, with 50% meeting the diagnostic criteria for M.E. & a growing number experiencing PEM.
Read 4 tweets
If you’re a researcher & interested in making a difference in the field of #MECFS, then this opportunity could be for you.

In 2022, the @PSPforMECFS, led by #pwME, their carers & clinicians, identified the top 10+ research priorities, including post-exertional malaise (PEM). black and white photo of ma...
The @The_MRC which co-funded the ME/CFS Priority Setting Partnership, is looking to encourage high-quality funding applications to any of their research board grant or fellowship opportunities.
Building a portfolio of #MECFS research has been a priority for the MRC for several years.

They'd particularly welcome proposals that address 1 or more of the research areas identified by the ME/CFS Priority Setting Partnership.

Read about these here:
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What I mean is that they saw me before. They saw me sick. They saw me moderate, mild, severe. They heard and witness the dozens of symptoms accumulating for years. They saw it. I didn't know what was happening to me. I checked SO MANY OF the mecfs symptoms for YEARS.
doctors even diagnose me orthostatomic hypotension, orthostatic intolerance, then pots. the raynauds, like a lot of these conditions. But they did nothing about it. "It will disappear" Guess what ? It got worse. i even had a test for an illness that causes red blood cells to not
be able to transport the oxygen through the body. like they all saw that something was wrong but it was "nothing"

Of course they kept blaming the fact that I was sick and getting worse on me. "I wasn't doing enough" while I was overworking and probably in crashes all the time.
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My doctor dismissed me, my wordsw my symptoms, for 10 years (20 if you take the rest) then didn't see me for a few years.
Fast forward i'm very severe ME almost dying. He came because i've been almost dying for months. After YEARS.

He did ask me why he hadn't see me these past
few years.
Well I became housebound then completely bedridden, bedbound, because they didn't listen to me.

This was such an insult.

When I gave him (again) the list of symptoms I've been having and complaining about for 10 years, the reply was so insulting.
I was 100% bedridden. For weeks, months. At this point. In the dark. No energy. Difficulty breathing and speaking. Out of breath. Hurting like hell. Lost a lot of weight. Dehydrated.

He SIGHED. At my list of symptoms. Said that this was "a lot" like I was exagerating, inventing,
Read 7 tweets
May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by liking and/or retweeting this video. This 2017 TED talk features @jenbrea.

#MyalgicE #MyalgicEncephalomyelitis

Day #1 Image
@jenbrea 2/

May is Myalgic Encephalomyelitis (ME) Awareness Month.
You can help by sharing and/or liking this video. It is 3 minutes 5 seconds long.

This film will give you an introduction to PEM (Post Exertional Malaise).

Once you've understood what PEM is……
@jenbrea 3/
May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by sharing and/or liking this video (9 minutes) This is ME (2020) "A short film exploring 'Spoon Theory' told through the eyes of a young woman struggling with ME/Chronic Fatigue Syndrome"……
Read 20 tweets
May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by liking and/or retweeting this image.

#MyalgicE #MyalgicEncephalomyelitis #Day1 Image
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retweeting and/or liking this image.

Day #2
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome Image
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by re-tweeting and/or liking this image.

Day #3

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis
#ChronicFatigueSyndrome MUSCLE Myalgic Encephalomye...
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"@BhupeshPrusty Prusty thinks #MECFS originates in early childhood, when most people are infected by human betaherpesvirus 6B (HHV-6B), which causes a mild illness lasting a few days. “Afterwards, the virus stays in our body for the rest of our lives,” 🧵…
says Prusty. Later in life, the virus can become reactivated – and it is this that Prusty and some others believe causes ME/CFS.

In a 2021 study, Cliff and her colleagues took monthly saliva samples from 30 people with #MECFS and 14 people who didn’t have the condition. Those 🧵
with #MECFS had higher levels of HHV-6B and another herpes virus, HHV-7, than those without. In people whose symptoms fluctuated over time, more severe symptoms were associated with higher levels of HHV-6B and HHV-7, than those without. In people whose symptoms fluctuated 🧵
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We are here @scotparl ready to see which MSPs stand up for #pwME in #Scotland in @SueJWebber's debate today 💪

Brilliant to be joined by #pwME, their families, and colleagues from @actionforme and @LCKScotland

Watch live on Scottish Parliament TV: ME Action Scotland volunteer Karima outside the Scottish Par
@ScotParl @SueJWebber @actionforme @LCKScotland Meant to say, starts at 12.45pm! Can you tell we're excited 😅 Will do our best to live tweet on this thread as we go.
We’re off! @SueJWebber opens the debate, sharing @therealmecfs’s powerful words. Jo’s here with us in the chamber today ❤️ Also sharing a story of a #pwME post-Covid. You are all with us in spirit 💪
Read 17 tweets
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)

2 of 4 authors are MDs


I thought this was very good. Will post extracts.
#MEcfs #CFS #MedEd
1/ Screenshot of abstract

My overview:

Paper has lots of useful points & also helpful overall to show how the NICE guidelines for ME/CFS have changed dramatically in the UK from the 2007 version, with the updated approach being much more sympathetic regarding helping patients.

#MyalgicE #PwME #CFSME

“The new NICE guideline for ME/CFS…recognis[es] the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.”

#mecfs #cfs #neurome #cfsme #myalgice #pwme
Read 26 tweets
🧵 thread

I never thought we would have to take the old stories out of mothballs again. 🕸🪰

But in 2022, the German institute IQWiG recommends the harmful treatment GET for mild and moderate ME patients.

So here we go again... 😮‍💨 What is Pacegate?

IQWiG's recommendation to GET in mild and moderate ME will result in many bedridden patients. It refers to the discredited PACE trial. Statistics professor Bruce Levin called PACE "the height of clinical trial amateurism."

Already the inclusion criteria of the PACE Trial are non-specific. The Oxford criteria are so broad, it is questionable how many participants had ME. In 2015, the US Agency for Healthcare Research and Quality wrote "[The Oxford criteria] may impair progress and cause harm."

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🧵Die Empfehlung des IQWiG zu GET bei milder und moderater ME wird viele Patient:innen in die Bettlägerigkeit bringen. Sie bezieht sich auf das diskreditierte PACE Trial. Statistikprofessor Bruce Levin bezeichnete PACE als «Höhepunkt des Amateurismus bei klinischen Studien».
Bereits die Einschlusskriterien des PACE Trial sind unspezifisch. Die Oxford-Kriterien sind so breit, dass es fraglich ist, wie viele der Teilnehmer ME hatten. 2015 schrieb das US-Gesundheitsministerium, über die Oxford Kriterien: «[they] may impair progress and cause harm».
Die Teilnehmer des PACE-Trials wurden gezielt beeinflusst. Vor dem Start des Trials erhielten sie Informationen, dass «CBT eine wirksame und sichere Behandlung ist» und dass «die meisten Menschen mit CFS/ME durch GET entweder 'viel besser' oder sehr viel besser' fühlten.»
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@usabilityliz @PaulGarnerWoof @ManvBrain @NYMag Looking back over my illness, time & again, my progress towards recovery has relied on me standing up for myself.

British medicine removed my food and shelter. That was the treatment for M.E.

I feel @davidtuller1 left me to suffer abuse for years. And this sums up M.E activism.
@usabilityliz @PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 I cannot report suicidal thoughts to the British M.E Association.

I cannot report threats, and years and years of abuse.
@usabilityliz @PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 The lives of M.E patients have been reduced to that of a football, kicked back and forth between doctors and activists who care more about the game than about the suffering.
Read 33 tweets
Some summary info #mecfs #pwME

Treatments that haven't worked for me: LDN, IVIG, Valtrex, Mestinon, ketamine, Diamox, Adderall, memantine/amantadine, cromolyn, various allergy meds, prednisone, Plaquenil, L-dopa, aspirin, Xifaxin, and about a million vitamins and supplements.
(Oh, also Florinef, and B12 injections, probiotics, prebiotics...)

Treatments that have: Abilify, ketotifen, Singulair, maybe Deplin.

Diagnoses: MECFS, MCAS, SIBO, dysautonomia (autonomic testing abnormalities), preload failure (Systrom's exercise test), some other abnormal
labwork. Connective tissue issues: 4-5/9 Beighton, TMJ, hip dysplasia at birth, but no EDS or genetic markers (Dr. Milunsky, geneticist). CCI (Dr. Patel, etc.), SFN.

Doctors: Dr. Bonilla @ Stanford, Dr. Chheda @ CCD, Dr. Felsenstein, Dr. Systrom, and Dr. Farhad @ MGH/Brigham...
Read 19 tweets
This excellent report by @kathrynsbach is very sobering. Every country, especially those who have let #Covid rip, can expect major economic damage because of #LongCovid. But as a survivor of a historical epidemic that triggered mass #MECFS I think there's plenty more to come. A🧵
2/ What governments worldwide don't yet seem to realise is that - even if the pandemic ends tomorrow, and not a single extra person falls victim to #LongCovid henceforth - the damage to people's lives & entire economies will likely snowball significantly over time.
3/ They don't realise this yet because governments worldwide have collectively ignored #MECFS etc for decades. They've failed to learn from previous viral epidemics that have triggered long-term disability, because they've failed to track adverse health outcomes longitudinally.
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Some extracts from “The politics underpinning the neglect of people with ME/#CFS” which summarises her paper “Towards a critical psychology of #chronicfatiguesyndrome: #biopsychosocial narratives & UK welfare reform” by @JoElizaHunt…

#MEcfs #PwME

“The [#biopsychosocial] model has been used as psychosocial model, to re-frame chronic health conditions (particularly those surrounded by medical controversy or uncertainty) into psychosocial entities, allegedly amenable to psychosocial healthcare interventions (contd)”

“(Contd) and thus to ‘recovery’ and re-entry into the labour market. Such health conditions could thus be largely exempted from welfare provision, private disability insurance protection & on-going biomedical care, reducing state expenditure in these areas (contd)”
#MEcfs #CFS
Read 17 tweets
Press release for New Zealand paper:

“New research provides insight into Long COVID and ME: Researchers have uncovered how post-viral fatigue syndromes, including #LongCOVID, become life-changing diseases & why patients suffer frequent relapses”

#MEcfs #CFS #PwME #PwLC


“Arising commonly from a viral infection, #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS), is known to cause brain-centered symptoms of neuroinflammation, loss of homeostasis, brain
fog, lack of refreshing sleep, & poor response to even small stresses”


#LongCOVID has similar effects on people and is believed to also be
caused by neuroinflammation.

Lead author Emeritus Professor Warren Tate, of the University of Otago's Department of Biochemistry, says how these debilitating brain effects develop is poorly understood”
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“Scottish Government backs NICE guideline”…

“In December 2021, the Scottish Government commissioned Blake Stevenson Ltd to engage with stakeholders…to gather
their views on the NICE guideline on #ME/#CFS

#MEcfs #PwME #ChronicFatigueSyndrome


“For this independent stakeholder review, a total of 37 stakeholders contributed. This consisted of 14 clinicians, 10 third sector #ME/#CFS organisations/academics & 13 people with lived experience of #MECFS,

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME

“and a further 93 people responded following an online survey [on the 2021 NICE #MECFS guidelines] that was
distributed to a wider stakeholder group. The response from the majority
of stakeholders was overwhelmingly positive”

#NeuroME #CFSME #MyalgicEncephalomyelitis
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It's 3rd anniversary of our paper
"Monitoring treatment harm in #MyalgicEncephalomyelitis / #CFS: A freedom-of-information study of NHS specialist centres in England"…
Hopefully it will influence, among other things, #LongCovid clinics


Summary article for laypeople:
"Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" (June 2019)…

#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

I searched but couldn't find a legal copy online of "Monitoring treatment harm in #MyalgicE/#ChronicFatigueSyndrome ..." that others can access so I uploaded here… what we submitted to the journal which is something we own the copyright on.

#MEcfs #CFS
Read 4 tweets
New Zealand:
“Scientists studying potential link between [#ChronicFatigueSyndrome] & #longCovid struggle for funding”…

On Prof Tate & his research team. He seems like the sort of scientist we really want in field.

#MEcfs #PwME #MyalgicE #CFS #CFSME

“A small Dunedin-based team of researchers are critical to
understanding fatigue disease in New Zealand, but they might not be
around in another year.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #MEcfs #CFS #PwME #PwLC #MyalgicE

“Emeritus Professor Warren Tate says it took two decades for #chronicfatiguesyndrome research to be taken seriously, yet after a decade of good work it is still a mission to secure funding.

As of this week, they still didn’t have the funding to continue in 2023”

#MEcfs #CFS
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A story about ME.

In the late winter of 2004, I caught a nasty virus—perhaps SARS-CoV, perhaps not—and since then my life has been a series of shrinking options and forced limits. Take too many steps? Bed. Cook a meal? Bed. Mental stress? Bed. Hangout? Bed. Enjoy the beach? Bed.
In 2011, I was diagnosed with Myalgic Encencephalomyelitis—ME—but not before the push-crash cycle left me unable to work, unable to lead a normal life. PEM, a racing pulse, breathlessness, sleep disorders, OI, heat/cold/sound/light sensitivities—sounds fun, right?!
But interestingly, elevated liver enzyme levels were some of the first diagnostic results to raise a red flag after infection. The levels have bounced around, but have remained too high since my fateful trip to Europe in 2004. In early 2017, I was also diagnosed with NAFLD.
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Minister Donnelly, with respect, this research is not "invaluable". It is not yet peer-reviewed. It is not yet published. It does not seem to be pre-registered. The findings on the face of things do not even demonstrate proof-of-concept



There are many salient methodological shortcomings: (a) non-random selection of participants; (b) unclear diagnosis; (c) small sample; and (e) NO CONTROL GROUP; etc etc.

These pts had 'persistent symptoms' at best, far from the #LongCovid that affects so many


@ahandvanish This was a conference presentation, not a journal article. Its media appearance represents 'science-by-press-conference'. We should await peer-reviewed publication of final results.

Some 75% of "preprint" #COVID studies never go on to be published

Read 6 tweets

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