Discover and read the best of Twitter Threads about #MyalgicE

Most recents (24)

What an ill-educated, badly reasoned & frankly dumb comment this is, posted under story by @TimesONeill on new treatment standard for ME (myalgic encephalomyelitis)/CFS (chronic fatigue syndrome).

NICE are de-listing CBT & GET (graded exercise) as #MECFS therapies

The author of the comment, MichaelS (who he?), makes many ranty points, touching on a several demeaning anti-disability tropes.

Internet comments that stigmatize disability groups are nothing new, unfortunately. But this comment is special

#pwME #MECFS #myalgicE

The commenter says, "how does he expect to measure success of such therapies, if not by patient reporting? There is no other measure of the impact of this condition!"

To which I say, "Are you kidding me?!"

#pwME #MECFS #myalgicencephalomyelitis

Read 16 tweets
The strength it takes to live with #SevereME for decades defies understanding

Let alone when it begins in childhood, preemptively deleting the opportunities and joys of a normal life

Left having to fight for yourself in the midst of debilitating illness with little to no help
And then most healthy people dare to say #severeME is fake/malingering or too much complaining, then to deny it or give BS advice?

Please, feel free to get in the shoes of a #pwME for a few years. The #millionsmissing have left plenty of them on the roadside for you to try.
On the #SevereME menu: at a bare minimum, a dozen symptoms that leave you bedbound 24/7

Unable to tolerate light, sound, touch, smells, to think, speak and move

Requiring assistance to eat, shower, use the toilet

The smallest thing you do flares your symptoms for days or weeks
Read 17 tweets
🧵1/ Every day this month I'll add a different piece of ME/CFS biomedical research to this tweet so that by the end of #MEAwarenessMonth there'll be a nice long thread of biomedical research papers to keep or share. First up:
…… #MECFS #pwME
🧵2/ 'Myalgic encephalomyelitis/chronic fatigue syndrome patients exhibit altered T cell metabolism and cytokine associations', Maureen R. Hanson et al #MEAwarenessMonth #pwME #MECFS #research #MedTwitter #MedEd…
🧵3/ 'Distinct plasma immune signatures in ME/CFS are present early in the course of illness', Mady Hornig et al #MEAwarenessMonth #pwME #MECFS #researchpaper #MedTwitter…
Read 28 tweets
Megathread: 1 Trying to unpick reasons why people disengage from those with #chronicillness such as #ME My thoughts below. Taken a couple of months! Feel free to add #neisvoid #pwme #friendship #relationships #MyalgicE #family #ghosting #carers #Grief #DisabilityTwitter #MECFS
2. Fear. They would rather not contemplate how life can be so suddenly derailed. They cannot bear to think about suffering and don't want to face up to such realities
3. Because they love you they find it too hard to contemplate your suffering so shy away from it
Read 16 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
1/ Our association has written an open letter to the French health authorities to warn about the risk of myalgic encephalomyelitis from Covid, asking for:

- recognition, care & biomedical research
- notice of caution on exercise therapy


2/ Among the 92 recipients of this letter : @MinSoliSante (cabinet of the Minister of Health @olivierveran), @AlerteSanitaire, @SantePubliqueFr, @HAS_sante (High Authority of Health), @hcsp_fr

We reached out to MPs working on #LongCovid bills incl. @MIRALLESMP @TrastourIsnart
3/ The current situation of the 300K+ ME patients in France is unacceptable:

- no recognition despite its classification as a neurological disease by @WHO
- a routinely prescribed iatrogenic treatment
- severe disability w/o help
- barely a handful of specialists treating it
Read 15 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
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
Their warped sense of “gains” bares no resemblance to any actual reality. It is in fact #prejudice #stigma & #disabilitydenial

What they think & project on to patients vs the actual reality: A thread. Image
1. I earned better money, kudos & respect in my job in film. Benefits process is cruel, demeaning & arduous & for a pittance.
I think I will randomly throw away a great career, money & status for a shitty stigmatised emprisioned demeaning life on the dole ... said no one ever!!
Equipment? Wtf. What “equipment” is that? 🤨🤷🏻‍♀️

I have not received anything to help my day to day life living with this disability in 20 years.

I bought myself a stick seat and a shower seat. I know how to really spoil myself with something fancy(!) 🙄🤦🏻‍♀️
Read 12 tweets
AstraZeneca, the company working to develop a vaccine for SARS-CoV-2, has stopped the trial to review the “potentially unexplained illness” in one of the participants. 1/ #r4today #pwME #MyalgicE #MEcfs #COVID19 #vaccine
One report suggests the participant has developed myelitis (spinal cord inflammation) - a feature of Myalgic Encephalomyelitis (aka ME/CFS) that's difficult to test for. There's also some disagreement over how often it's present and to what extent. 2/ #r4today #MECFS #vaccine
Have researchers inadvertently discovered a way to trigger ME? We already know that some people develop ME or experience a relapse following vaccination. Could this be an opportunity for ME researchers to catch ME emerging? 3/ @OpenMedF @OpenmedfCanada #r4today #MECFS #vaccine
Read 3 tweets
'How Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Progresses: The Natural History of ME/CFS' #pwME #MyalgicE #MEcfs #MedEd #MedTwitter #LongCovid #longhaulers @pulsetoday @TheDA_UK @rcgp @BMA_GP @NHS_HealthEdEng @NHS @medschooladvice @NHSuk…
"In people who develop ME/CFS, normal homeostatic processes in response to adverse insults may be replaced by aberrant responses leading to dysfunctional states."
"Thus, the predominantly neuro-immune manifestations, underlined by a hyper-metabolic state, that characterize early disease, may be followed by various processes leading to multi-systemic abnormalities and related symptoms." #MEcfs
Read 3 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
1/25 I would like to deconstruct one of the persistent myths about #MyalgicE, because I'm seeing a recurring theme where quite a few #pwme are making sweeping statements on Twitter, that have the unfortunate effect of invalidating the diagnoses of other #PwME and/or #PwCFS
2/25 The myth often comes in two parts: (1) that there is just one set of diagnostic criteria that we should all consider to be Holy Scripture, and (2) there is only one possible family of virus that can cause the particular disease described in the Hallowed Diagnostic Writings.
3/25 Here's one recent example to illustrate my point. "ME is based on Ramsay’s Definition and an Enteroviral trigger. … It’s not ME if something else causes it." (NB multiple #pwme have been saying this for years, so this is just one example, and not intended to be personal.)
Read 26 tweets

As a growing number of experts warn of a rise in ME following the #COVID19 pandemic, the need for treatments that help, not harm, is ever stronger.

We are the #MillionsMissing & we need change now. A thread. #pwme
Thank you to Professor Chris Ponting @CGATist and Dr Nina Muirhead for their expert testimony, and to the many people with ME who submitted videos to be part of this.
#pwme #COVID19 #MyalgicE

Watch the full version here, and share it far and wide.
After the #COVID19 pandemic, the number of people living with ME and other chronic illnesses will grow.
Debilitating symptoms won’t resolve, and physical isolation won’t end.

We are the #MillionsMissing, and we call for an urgent response to mitigate this coming crisis. #pwme
Read 6 tweets
Some mental health service providers (some familiar names among them) are already positioning themselves to take care of the long-term health of #COVID19 patients. Care must be taken to avoid the same errors made in treating patients with #MECFS 1/ #pwME #MyalgicE
While some patients will surely benefit from mental health support, all post-acute #COVID19 patients should receive ongoing medical treatment for all long-term sequelae, as well as adequate financial support from government. 2/ #pwME #MyalgicE #MECFS
However, if the treatment of people with #MECFS is anything to go by, post-acute #COVID19 patients could end up receiving only mental health support, i.e. CBT. Furthermore, depending on the provider, this might be deemed sufficient for all persistent physical issues. 3/ #pwME
Read 4 tweets

12 reasons that <some> doctors disbelieve patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

1. Doctors tended to see #pwME as having “certain personality traits"

#SickNotWeak #MedEd #MedicalTwitter…
2. Doctors felt that #MyalgicE lacks a plausible pathological mechanism and its symptoms couldn't be ascribed to a precise location

3. There has been variation in the diagnostic criteria for #MECFS which has delegitimised the disease

4. Doctors felt that #pwME had a poor work ethic

5. Doctors felt that #pwME had a poor attitude, they lacked stoicism and did not make every effort to get better as quickly as possible

#chronicillness #MedEd…
Read 8 tweets
Like Boris Johnson, I was "a man of enormous energy" before I developed ME after a viral infection 10 years ago. However, personality traits count for nothing when energy production is impaired at a cellular level. People who develop post-infectious...1/ #pwME #MyalgicE #MEcfs
...syndromes aren't weak, nor do they have some personality defect. It's natural to resist illness and want to recover, but the outcome is often out of our hands. 2/ #pwME #MyalgicE #MEcfs
This is what frightens us about illness; and it's why the medical profession abandons, and society can't tolerate, people who don't ever fully recover. 3/ #pwME #MyalgicE #MEcfs
Read 3 tweets
1. thread: #coronavirus and #MECFS

We know that #MECFS can be triggered by a range of viral pathogens

So it is likely that #coronavirus could trigger a worldwide spike in ME/CFS in the next 6-18 months

2. Post-infection #MECFS has been reported following infection from brucellosis, #EBV (mononucleosis), #LymeDisease, Q-fever, Ross River virus, viral meningitis, dengue fever and...……
3. increased risk of developing #MECFS has already been associated with a previous viral #pandemic

This study found that young/healthy people were just as likely as the elderly to develop #MyalgicE following in an #influenza pandemic

Read 8 tweets
The introduction of so-called 'medically unexplained symptoms' (MUS) to GPs' diagnostic toolkit means many people with complex, chronic illnesses will not receive proper medical attention or thorough investigation of their physical problems. 1/ #pwME #MyalgicE #nhs #MedEd
The routine channeling of ME/CFS patients to psychological services delivered by IAPT cements the NHS's view of the illness as psychogenic. This is out of step with the scientific evidence, a waste of resources and a grave disservice to an already underserved patient group. 2/
One can only view the situation with dismay. How's it allowed to happen? Who's calling the shots? Why doesn't anyone other than ME patients + genuine ME experts seem to care? How much longer can the medical profession continue ignoring the evidence + mistreating ME patients? 3/
Read 5 tweets
📃 Important paper drawing attention to how NHS patients with ME/CFS are wrongly diagnosed as suffering from so-called 'medically unexplained symptoms' and consequently mistreated with CBT via IAPT. #pwME #MyalgicE #MedEd #MEcfs #health #NHS
The disregard for patients' health/ well-being and the vast body of scientific research pointing to the fact that ME/CFS is an organic disease, is truly staggering. The NHS couldn't be more wrong. It's a colossal waste of resources and a terrible injustice.
As the world of science moves on in elucidating the pathophysiology of ME/CFS, @NHSuk takes a huge step backward by insisting on regarding the debilitating, chronic, multi-system disease as a mental health problem.
Read 3 tweets

Related hashtags

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3.00/month or $30.00/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!