Discover and read the best of Twitter Threads about #pwME

Most recents (24)

1/ The problem with Myalgic Encephalomyeltis/Chronic Fatigue Syndrome #MECFS is that it seems so ridiculous that exercise could actually make patients worse

How can exercise be so bad for #pwME but so good for almost every other serious illness?

2/ New study by @4WorkWell @sunsopeningband et al shows that #MECFS patients have metabolic defects that cannot be explained by exercise phobias, deconditioning or 'illness beliefs'

#pwME have reduced oxygen consumption during exercise tests
3/ #pwME have an impaired ability to increase their oxygen consumption during exercise

This is entirely different to every other disease we know including cardiovascular disease, lung disease, end-stage renal disease, hypertension & cystic fibrosis

Read 11 tweets
1/ How neglected is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome research?

@NIH funding for ME/CFS in 2017 was ~$25mill

Fair funding relative to disease burden should be ~$350mill

That means #MECFS research was short-changed by $325,000,000 (14-fold!) in just ONE YEAR
2/ Buckle up!

@CenterRes analysis found that even though the disease burden of #MECFS was double that of HIV/AIDS, #AIDS research received ~$5billion in 2017

Thats a 20-fold shortfall, amounting to ~$4,975,000,000 lost #MECFS funding in just ONE YEAR!
3/ And, the graph below shows that #MECFS research is woefully underfunded compared to similarly burdensome diseases

Note: the vertical Y-axis scale on the graph is logarithmic

So #IBS and #pneumonia actually receive 10x MORE funding than #MECFS
Read 9 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
I am going to write something that will be difficult to understand unless you have been unable to work, severely incapacitated, homebound, or bedridden due to a viral infection for 1-40 years. #MECFS
We (#pwme) are VERY scared for #COVID19 patients who develop chronic symptoms, and have been talking about it since January. We want nothing more than to help spare them our fate.
Yet––it is HEARTBREAKING to see some of the intense outpouring of compassion from doctors for these patients, the proactive (and appropriate) scientific curiosity.
Read 15 tweets
Dear @PaulGarnerWoof as a doctor myself, who’s been on same journey, it’s been interesting to read the evolution of your thoughts on experiencing #Covid_19 viral/postviral fatigue & then on Sx experienced by those who develop #ME/CFS . People who are so often wrongly disbelieved.
@PaulGarnerWoof to read u say,
“I am reading materials about pacing and CFS/ME and listening to the CFS/ME community. I am taken aback that doctors have been so dismissive of what these patients have been saying for so long” & to hear youve spoken to Charles Shepherd too is great
@PaulGarnerWoof so much work is being done by charities & individuals to advocate for patients but also to teach, educate & convince many doctors that these symptoms are REAL, debilitating & MUST be believed & correctly advised & managed.
@MEAssociation @MEActNet @actionforme
Read 5 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
Mega Dump

Manufacturing a crisis

#UseDiscernment #ThinkForYourself
The Chronic Fatigue Syndrome Epidemic Cover-up: How a Little Newspaper Solved the Biggest Scientific and Political Mystery of Our Time…
The Chronic Fatigue Syndrome Epidemic Cover-up Volume Two: The Origins of Totalitarianism in Science and Medicine…
Read 54 tweets
(1/4) #MECFS is a multi-systemic disease where we are trying to put the pieces of a huge puzzle together. In the Network Analysis shown below Lysine plays a central role. Dr Ron Davis found high Lysine levels in #PwME.
(2/4) Next step is to try and find why this is so. There are a number of concepts (nodes) next to Lysine. Some of them are expected to be there. Others (such as Osteopontin) may not be expected or known to a researcher. We many then find using the associations shown above...
(3/4)..that Thrombospondin (researched by Dr Alain Moreau), Osteopontin, collagen share some common concepts which may be of interest (e.g Transglutaminase). The human brain cannot make all of these connections.We have the technology to analyze thousands of research papers...
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
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
NL in #Lockdown? zorg werkt door, ook de thuiszorg. Laat jij de thuishulp doorlopen of bel je af? Zorg orgs. gaan nogal verschillend om met de corona crisis. Dat heeft gevolgen voor #coronaNL en #pwME Punten ter overweging:
Actiz, branche organisatie voor 400 zorgorganisaties, publiceerde vorige week een advies dat slecht kan uitpakken voor thuiszorgpersoneel, patienten & clienten. Geadviseerd wordt door te werken bij griepverschijnselen en koorts onder de 38 graden.
Naast corona is griep een opkomend probleem. “Afgelopen week bezochten 104 op de 100.000 mensen de huisarts met griepachtige klachten. Dat is boven de grens voor een griepepidemie”, aldus het RIVM.…
Read 11 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
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
1/ I've had a few people block me over my Tweet about the division being caused in the ME community over the use of the name ME/CFS. I've even had people pm me on Facebook to rant, then blocked me so I couldn't respond. I'm not sure what wasn't clear about my Tweet #PwME #MECFS
2/ It's not about the name - I hate CFS too. It's about people constantly criticising me, & others, for the name we choose to use. This is what is causing a divide. I only use ME/CFS when writing posts aimed at the general public, this is explained in my original tweet. #PwME
3/ Certain people feel the need to make this personal, it's not. But I guess I'm not going to change their opinions or actions. In an ideal world the name CFS wouldn't exist, but doctors in the UK do not recognise the term ME, just CFS - neither do most of the general public.
Read 8 tweets
1/ Thread

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

Is it really that bad?

Trigger warnings: The studies below paint a very bleak picture

#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
2/ Full recovery from #MECFS is rare

The median recovery rate from multiple published studies is 3-7%

(just 1 paper linked below)
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter…
3/ ~25% of #MECFS patients are housebound or bedbound.....

....sometimes for decades!

That means no work, no vacations, no social life, lost time, lost goals, lost relationships.....…
Read 11 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets

There seems to be a GLOBAL EPIDEMIC of #ChronicIgnoranceSyndrome that is effecting the medical establishment & resulting in constant misinformation & treatments for #ChronicPain #CFS #pwME #Fibromyalgia #hEDS #EDS #Lyme #FND, the list is...1/2
shocking & endless. So during #InvisibleDisabilitiesWeek we ALL have an opportunity to highlight this spread of #ChronicIgnoranceSyndrome, the effect this has had on our #MentalHealth & what we are collectively doing daily to fight this medical ignorance & abuse! 🦓✊ #MAIMES
Read 3 tweets
Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

Read 58 tweets
Hey @guardian @guardianscience This would be a really interesting dialogue to continue if you opened it up to the majority of researchers who don’t support the PACE trial and have good relationships with patients, instead of just giving Sharpe a platform.…
There are so many flaws in Sharpe’s argument that I won’t be able to cover them all myself (due to ME), but for one, his attempt to differentiate between ME and CFS to justify their work when he knows full well that in practice it is all considered the same. @guardianscience
This means that if you are anywhere on the spectrum including #SevereME (see #SevereMEday yesterday) with extreme exercise intolerance, then you can be put forward for CBT/GET, and actually many Severe patients were formerly moderate before these “treatments” @guardianscience
Read 10 tweets
In the promo copy at the link, it says the classes are teaching the "latest information" in #MECFS, as well as the "differential diagnosis" of ME/CFS.

I'm puzzled how that can be without a single ME/CFS expert as one of the presenters?

"Recognizing" = diagnosis. "Pathoetiology" refers to the genetic, immune and metabolic errors that launch the illness. "Best practices" would be managing all that multi-system dysfunction.

Is the class being oversold without an #MECFS doctor aboard?

Is the class selling expertise the presenters don't have?

The instructors are talented exercise and endurance geeks,
but none of them are medical doctors.
Why does the text talk about diagnosis and management of #MECFS?

Is the class about pacing? Then it’s over-promising.

Read 10 tweets
#MECFS citizen science: What are the answers to these 6 important questions on Myalgic Encephalomyelitis???

The insightful questions below come from this nice @diagnostic_mdpi review

#mdpidiagnostics #pwME #chronicillness #SickNotWeak #MyalgicE…
1. Is there a genetic susceptibility which leaves some individuals vulnerable to #MECFS after exposure to a virus, bacteria or toxic chemical?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #medtwitter #genetic
2. What is the key initial physiological trigger causing the dramatic downward spiral in health leading to #MECFS?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #medtwitter #immunity
Read 8 tweets

#MECFS patients face disbelief that they are sick

Many #MECFS patients are told that they are simply tired, stressed, anxious, depressed, lazy or malingering

How can #pwME respond to such disbelief and lack of understanding??????

See thread below:
2. Below are 7 evidence-based scientifically supported findings that you can use to inform those who dont understand that #MECFS is a multi-organ, systemic and severely debilitating illness

From a lovely review by @HarvardAskDrK in @JAMA_current
3. #pwME have deficiencies in 3 organs important for the body's hormonal balances called the hypothalamic-pituitary-adrenal axis

Importantly, the deficiencies observed in #MECFS patients are quite different to that seen in #depression
Read 10 tweets
EPIC THREAD. I have a cautionary message to my fellow #PwME about neck manipulation. I know we’re all paying more attention to the neck/cervical spine since @jenbrea’s discussion of her successful surgery for craniocervical instability. 1/9
I’ve heard many anecdotal stories similar to Jen’s, and I think proper imaging should be accessible to every patient who needs it. But in the absence of access to care, many people are trying DIY neck solutions. Please DON’T. 2/9
Four years ago, my husband was in PT for a neck problem. A fully trained PT manipulated his neck a little to quickly, and partially tore my husband’s left vertebral artery. 36 hours we were in the ER because my husband had suffered a stroke in his medulla. 3/9
Read 9 tweets

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