Discover and read the best of Twitter Threads about #cfs

Most recents (24)

This thread =about #ME charities position on the need for more research & funding. I had a “problematic” discussion with the MEA on this last week, not just bec we disagreed! but their position “seems” afaiu at odds with what many in #pwME want/need or are they right? #mecfs
2) An Meruk report a few yrs ago seemed to agree with MPs calling for action as lack of progress, suffering & economic cost was unacceptable…

They said the ministers response to calls in HoC debate for more research “was disappointing in the extreme“
3)Stephen brine then minister said “As set out in previous debates, the Government invest £1.7 billion a year in health research via the National Institute for Health Research &the MRC through UK Research a&Innovation. Together, the NIHR&MRC welcome high-quality applications for”
Read 18 tweets
I’d like to take this opportunity while #ME #CFS is in all major news outlets today, to recognise the role our media have In peddling false narratives of ‘tired’ people... @BBCNews @Telegraph @guardian @thetimes chose to run these images 👇🏼

I’ve replaced with a little realism
This is @DafoeWhitney bed bound with #ME for years, and like myself, only leaves his room to attend hospital appointments via stretcher.…
This is Merryn Crofts. Merryn died at age 21, after years of neglect and frustration from disbelief within the medical profession. Cause of death: Severe #ME…
Read 5 tweets
大変お世話になっている #筋痛性脳脊髄炎/#慢性疲労症候群 の専門の先生に、#ME/#CFS の診断について伺いました。
ME/CFSの診断基準のゴールデンスタンダードはカナダ基準とされていますが、その他にもいくつもあり、日本では研究班による診断基準試案… があるのみです。
さらに、実際にME/CFSの専門外来を受診された #コロナ後遺症 患者さんたちのお話や、従来のME/CFS患者さんたちの話を伺うと、私が信頼している先生方も必ずしも診断基準通りに診断されていない様子。そのような混乱した状態にあるのに、ポッと出の私のようなものが診断を乱発していいはずがないという
思いがあります。今まで2800人以上の #コロナ後遺症 の患者さんたちを診察させていただいていますが、当然ながら「コロナ後遺症=ME/CFS」ではありません。「コロナ後遺症の一部がME/CFSに移行する」というのが正しい理解と思います。
Read 6 tweets
"#MyalgicEncephalomyelitis/#ChronicFatigueSyndrome: Essentials of Diagnosis & Management" (from US ME/#CFS Clinician Coalition)…

"21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by #MECFS"

"the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/#CFS

#ChronicFatigueSyndrome #MEcfs #MyalgicE #PwME #MyE #MEeps
"There are many steps that clinicians can take to improve the health, function, & quality of life of those with ME/#CFS, including those in whom #MECFS develops after COVID-19"

#PostViralFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #Covidlonghaulers #PostCovidSyndrome
Read 59 tweets
1) This is Ethan, now aged 15, and ill for 18 months. He would like to be listened to and believed. He is certain that he is not anxious and that he definitely does not have "anything to gain" from debilitating daily symptoms.

#AlwaysOurBabies #LongCovidKids #BacktoSchool2021 Image
2) Anna caught #covid in April 2020, 4 weeks later she had a terrifying "inflammatory response" & was so ill. The hospital refused to see her. She has #covid triggered #CFS & #PANS & been ill since. She's not the same happy, energetic little girl she was. 💔 #AlwaysOurBabies Image
3) This is Evie Mae, it doesn't seem two minutes ago that she was this little.
Now she's 13 and towers above me. Evie says she's tired of being tired.
Evie Mae has crippling #longcovid.
#longcovid #BacktoSchool2021
#longcovidkids #AlwaysOurBabies Image
Read 15 tweets
1/ @Karl_Lauterbach hat heute 2 Tweets mit Arbeiten zum Thema #LongCovid veröffentlicht, diesen:
@Karl_Lauterbach 2/ und diesen: . Beide Tweets legen nahe, dass eine Gefäß- und Gerinnungsstörung mit Entwicklung von oxidativem Stress Ursache von #LongCovid sein könnte. In beiden Tweets wird eine „unklare Prognose“, nach Infekt,bzw. die Gefährlichkeit von #COVID19 betont
@Karl_Lauterbach 3/ Doch was steht in den Studien wirklich drin? Ich habe es mal im Kapitel Pathogenese von #LongCovid unter dem Oberbegriff „Endothelopathie“ zusammengefasst:…. Für alle hier in a nutshell: Die erste Arbeit ist eine hämatologische Arbeit mit 50 Probanden…
Read 11 tweets
Different groups have FOIAed this #Lyme crooks email over the years. On the surface it is appalling, but what does it really mean? “This battle cannot be won on a scientific front...we need reinforcements from outside our field.”

In short, it means they’re guilty. Of what? 🧵
They rigged the #LymeDisease case definition to conform to diagnostics that were designed to detect a small minority of cases that are genetically predisposed to produce a strong antibody response.
Allen Steere had done a ton of research on the association of various HLAs with different antibody responses in #LymeDisease. Everyone knew by the early 1990s that the people with an arthritic knee had a strong immune response but weren’t very sick.
Read 21 tweets
1. It should not be that people end up traumatised by visiting Drs; that they put off going because of how they’ve been disbelieved, dismissed,treated as hysterical, or even yelled at. I know many of you with #MyalgicEncephalomyelitis can relate to what I’m saying.

2. I’ve grown to dread every visit to Drs & specialists. Not one of them has ever been truly interested in acknowledging that I have #ME, or taken it into account when ‘treating’ me. I use that word loosely, cos unless they acknowledge it,how can they fully treat me?

3. I’ve had #MyalgicE for 25 yrs, so that’s a sad indictment on the medical profession & governments who’ve ignored & maligned us for decades. Research funding has been abysmal, worldwide. Because it’s a common thread amongst people with #ME, I know it’s widespread.

Read 7 tweets
"No More Mr NICE Guy…" by Brian Hughes, a professor of psychology…

An incisive blog that covers the NICE ME/#CFS guidelines, issues regarding trials of nonpharmacological interventions in general, appeals to authority, etc.

#MEcfs #MyalgicE

"The new [NICE] guidelines not only repudiate a heretofore favoured treatment approach for a particular illness, they also threaten to discredit an entire (albeit quirky) branch of medicine — and, for good measure, to cast clouds over significant swathes of psychology too"
"Here is an extract from expert testimony provided by Jonathan Edwards, professor emeritus of clinical medicine at University College London" [on the #PACETrial authors trying to justify their use of post-hoc criteria rather than their original criteria]

#MEcfs #CFS #CBT
Read 15 tweets

Wichtiger Beitrag des WDR zum #LongCovid-Syndrom, das geschätzt 10-20% der Infizierten betrifft, mindestens 50.000 Menschen in 🇩🇪.

3 Gäste einer Familienfeier leiden noch nach Monaten an Spätfolgen

Es sprechen @HallekMichael & eine Charité-Medizinerin.

1️⃣ von 4️⃣:
Prof. @HallekMichael zu #LongCovid:

"Das ist wahrscheinlich noch nicht so sehr Bewusstsein sowohl der Öffentlichkeit als auch [...] der Ärzte, dass mit #COVID19 tatsächl. Langzeitkomplikationen verbunden sein können, die ernste Krankheiten für sich darstellen können."

2️⃣ von 4️⃣
Prof. Scheibenbogen, @ChariteBerlin zu #LongCovid:

"Was nicht so bekannt ist, [...] ist, dass auch jüngere Patienten, die anfangs gar nicht so eine schwere Infektion haben, anhaltend Symptome haben und viele von denen sind richtig krank & können nicht mehr arbeiten."

3️⃣ von 4️⃣
Read 16 tweets
PD White has just co-authored a #MECFS paper which has a dubious, wishy-washy recovery definition: not a complete remission of symptoms & a return to premorbid functioning" but where basically people who are not recovered are seen as recovered…
From a former patient of White's
'To me if I'm recovered, I'm able to come off benefits, work full time, do my house work & have a life. But when I said this he asked me: 'Do you want to go back to the life that gave you ME?' That's a cop out"
See more…
These bizarre & infuriating comments in 2006 on the draft NICE guidelines show again Peter White's odd views about #MECFS in general & recovery in particular

"A Selection of points the Barts CF Service made during the NICE Guidelines for #CFS/ME:"…
Read 11 tweets
Press Release from NICE about its new draft #MECFS guidelines that are out for consultation…

“The draft guideline also highlights the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind”


Draft NICE guidance “recognizes that #MECFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms,particularly where there is the potential for an intervention to benefit some people but cause harm in others”
“Because of harms reported by people with #MECFS + the committee’s own experience of the effects when people exceed their energy limits...any programme based on fixed incremental increases in physical activity or exercise eg GET should not be offered for treatment of ME/#CFS
Read 13 tweets
Misleading about mainstream CBT for #MECFS: the manuals show it's about reversing symptoms & impairments, & claim people should be able to recover with CBT. The results from trials are not particularly exciting esp. with regard to objective +/or long-term outcome measures

I'm not convinced by this claim either "Unsurprisingly, people experiencing many symptoms like this feel anxiety, which in turn can drive more physical symptoms.”

But otherwise could have been a lot worse.

#PostViralFatigueSyndrome #PostViralSyndrome #PVFS #MEcfs #CFS #MyalgicE
"ME/CFS has been continually written off–even by some in medicine–as a “made-up” or “psychological” issue because biological triggers for the issues have yet to be found. This can see patients maligned rather than supported" Cohort studies have shown it often follows infections
Read 4 tweets
“Doctors examining possible link between #chronicfatiguesyndrome and #COVID19: For many, chronic fatigue syndrome develops after a viral infection” by Dr Danielle Weitzer and Dr Christie Richardson…

#LongCovid #MEcfs #CFS #PostCovid #PVFS

“By this point, many people can identify symptoms of #COVID19 -- fever, fatigue, shortness of breath -- but fewer know that those can occur after a successful recovery* and closely resemble another illness: #chronicfatiguesyndrome

*I dislike using “recovery” in this way
“‘About 75 to 80% of #chronicfatiguesyndrome cases are post-viral in nature,’ estimated Dr. Mark VanNess, ‘The viral infection and following immune response are precipitating causes for long-term symptoms.’”

#LongCovid #PostViralSyndrome #PostViralFatigueSyndrome #MEcfs #CFS
Read 6 tweets
"#LongHaulers Are Redefining #Covid_19: Without understanding the lingering illness that some patients experience, we can’t understand the #pandemic."

In-depth reporting by @edyong209.
Include some discussion of #MEcfs…

#CFS #MyalgicE #PwME
“[#Covid] #Longhaulers had to set up their own support groups. They had to start running their own research projects. They formed alliances with people who have similar illnesses, such as dysautonomia & #myalgicencephalomyelitis aka #chronicfatiguesyndrome
#Covid19 #Covid_19
“More than 90 percent of [#Covid] #longhaulers also have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,”
Read 9 tweets

“The ME/CFS community with its knowledgebase, its research findings, its doctors, advocates and the patients who have been through it all, has much to contribute to the long haulers.”

#LongCovid #COVIDー19 #longneglected #LonghaulersUnite #MyalgicEncephalomyelitis

“You should know – and may already very well know – that many doctors have reacted to this kind of illness by denying it, by downplaying it, or by calling it psychological.”

#longhaulers #LongCovid #COVIDー19 #COVID19 #COVID #MEcfs #CFS #MyalgicE #ChronicFatigueSyndrome
Read 13 tweets
Se veía venir, se sentía... y de pronto llegó el crash/colapso. Falta de aire (mis músculos están agotados), dolor de cabeza, ojos hinchados y medió cerrados, mis piernas hace horas que a penas me responden, los sonidos me duelen, sí, cuando llega el crash la sensibilidad ⬇️
aumenta y tanto sonido como la luz molesta (aunque sean tenues) duelen. Toca hacerse un ovillo, meterse en la cama y pasar días hasta que el cuerpo pueda volver a funcionar, no puedo permitirme el lujo de ver una serie o escuchar música porque me aumentaría el los síntomas ⬇️
La #EncefalomielitisMialgica llego hace años, se fue agravando gracias a la terapia de ejercicio que los médicos te “recetan”, gracias al neurólogo que a pesar de no tener ni idea de esta enfermedad, se permitió cambiar de especialidad y creyendo ser psicólogo me dijo que lo ⬇️
Read 19 tweets
Our new meta analysis led by @SylvieAucoin now out in @_Anesthesiology. Seems like a good time for a thread on choosing a frailty instrument for #periop care 1/
2/ There are dozens of frailty instruments (big problem) but in reality 4 are commonly used: Frailty Index, Frailty Phenotype, Clinical Frailty Scale, Edmonton Frail Scale
3/ All 4 Frailty instruments predict/are associated with bad outcomes. Effective sizes vary but are not substantively different. Discrimination generally moderate, calibration WAY under-reported
Read 9 tweets
(1/X) (TW: Hypersomnie, Depression)

Hach ja. U nun kickt die #IdiopathischeHypersomnie direkt wieder (bzw frage mich aktuell, ob's nicht einfach #CFS ist. Würde es gerne mal abklären lassen, aber es gibt keine Klinik in der Nähe, hab 0 Power dafür u ist ebenso wenig behandelbar.
(2/x) Also bis auf die Bezeichnung kein Unterschied in meinem Leben).

Gestern ganze Nacht geschlafen. Morgens kurz zum Doc. Danach direkt wieder hinzulegen müssen. Gerade eben erst aufgequält. Wg Schreck Angststörung getriggert u dadurch indirekt immer auch gleich die Müdigkeit
(3/x) (wobei es nach aktuellen Zustand auch so in spätestens 1-2h genau so gewesen wäre). Dachte schreiben hilft bei 1, tut's manchmal. Dabei verweigerte Körper schon den Dienst u musste mich hinlegen. Da schreiben anstrengend, triggert's meine chron. Migräne/Fibro u dAugenprobs.
Read 29 tweets
We had the space to do the research on viral infection transitioning to chronic, neurological disease before #COVID19. When we've cleared the acute outbreaks, there will be millions still sick, left without treatment or care. (1/13) #pwME
"How could we have anticipated this?"
The neuro disease #MEcfs has always been a time bomb. Up to 80% of cases are post-infectious. To see this coming, you would only need to know that someday soon, there would be a viral outbreak of some kind. (2/13)
Here's the math. COVID may have already infected half of the population of the UK, and previous projections estimated that half of the world's population would get COVID. Let's say that's so, for the purposes of argument. That's 3.9 billion humans. (3/13)
Read 13 tweets
School's closed? Work cancelled or working from home? Quarantined or in isolation b/c of #coronavirus? Don't know what to do w/all the extra time?

#Spoonies & #unchangeables got you covered. We're experts on how to handle boredom & isolation.

A thread.
Fellow Spoonies, Unchangeables, #chronically ill peeps, feel free to chime in.

What to do with all this time?

Catch up on your fave shows on Netflix or start a new one.

No Netflix or Hulu? The following have free movies: Vudu, Crackle, Tubi, & Roku. Chime in if I missed some.
Books! If you like reading, download the Kindle app if you don't have a tablet. Amazon has Kindle Unlimited, a book subscription for $9.99/mo.

If you can't afford this, they always have free books. Or you can join an advance reader club on Facebook. Free books for reviews.
Read 24 tweets
Muy pero que muy agotada de esta situación. ¿Alguien sabe lo que se siente al padecer #SindomeQuimicoMultiple y NO poder salir de tu casa? Si sales te expones a tener síntomas HORRIBLES además de sentirte el ser más insoportable y rarito, siempre eres el que no puedes quedar
No sales a penas de casa, hueles hasta los perfumes de los foulards que llevan años en el cajón, hueles los químicos de los chicles, humo de coches, tintes, lacas, pinturas, humo, cremas.... no solo es que lo huelas con tu súper nariz detectalotodo, es que al primer ápice
De Quimico que entra en tu nariz, ojos o piel se desencadenan un montón de síntomas que no son pra nada agradables, primero te arde la garganta, sientes que dentro de tu pecho hay millones de cristalinos, notas como tú cabeza de hincha y duele, duele mucho, los ojos escuecen
Read 6 tweets

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