Discover and read the best of Twitter Threads about #pwme

Most recents (24)


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
Summary - this paper is a WEALTH of information for #MCAS

Pain is found in more than 75% of #MCAD patients

There is no official guideline for treatment of MCAD. The paper is about mediator-induced acute & chronic pain + therapy options

Prevalence of #MCAS in Germany is 17%
Wide-spread distribution and differences in mediator expression mean all organs/tissues are affected & presentation is very diverse

Can present oppositely among patients or even in the same patient at different times, or in different sites in a patient at the same time
Treatment involves trigger identification/avoidance + control of mast cell mediator production/action.

Mast cells and the nervous system influence each
other’s responses through mediators and cytokines

In the periphery mediators can stimulate receptors, resulting in pain
Read 19 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
I am so fed up with people claiming to absolutely know what causes #mecfs. People, we don't know for sure yet! We are getting closer to knowing, lots of leads and good research, but arguing that you know and that everyone else is wrong is ridiculous!
I have seen so many people say 'It's Lyme', 'It's mould', 'it's thyroid', 'it's CCI', 'it's enterovirus ONLY', 'it's EBV', 'It's not EBV'... There isn't enough scientific evidence for any of those claims. People seem to have different triggers. We don't know for sure.
If you're not an appropriately qualified scientist, I'm really sorry but you aren't qualified to claim to absolutely know what the cause is. Also, even qualified scientists don't know. You might knot what triggered your own ME, but that doesn't mean everyone else is the same.
Read 39 tweets
Now up: Dr. Ron Davis on OMF projects. Started w/ severe patient study. Focused on observation-- necessary BEFORE hypothesis generation, tho no NIH funding for it. #harvardmecfs #pwme
Very thorough workup of 20 patients-- probably $100,000 of testing on each one. #harvardmecfs #pwme
Focus on pathogen search-- developed new technologies incl search for DNA fragments in blood which can identify new viruses. W/ this tech, HIV virus wld have been found in under 24 hours! But no sig differences found w/ controls. #harvardmecfs #pwme
Read 14 tweets
Great to be able to attend #IIMEC14 today in London, a full agenda and not sure my brain will take it all in but I’m here with some of the giants in ME biomedical research. @Invest_in_ME
And the venue is amazing
Dr Ian Gibson - we will conquer #ME , one day you will all need other jobs because we will have solved it #IIMEC14
Read 66 tweets
There is so much to unpack about gender and #chronicillness, I barely know where to begin. But let's give it a go. Data THREAD first, personal experiences second. (1/9) #millionsmissingspeakout #pwME @MEActNet
Up until very recently, the majority of medical research has been performed on men. It used to be against the law to include most women in clinical trials. Even after that law was overturned, a second had to be enacted requiring we be included. #pwME (2/9)
The difference in the way women present symptoms and the ignorance around this kills.
When women have heart attacks, for example, the typical symptoms veer sharply from what med students learned from their textbooks. (3/9) #millionsmissingspeakout #pwME…
Read 9 tweets
The NIH call right now: a THREAD (1/LOTS) #mecfsatnih19 (Because a lot of it is about the conference!) #pwME #MillionsMissing
Avi Nath: updating on intramural program. Nath had a family emergency, which was why Wallitt stood on at the conference. "We've made tremendous progress, we are now at the midpoint of recruitment" and it's time for interim analysis. (2) #mecfsatnih19 #pwME
Did "exhaustive" testing so time to assess & judge if it's time to "retool". A lot of pts have the dx of #MyalgicE but they discovered other dx. Maybe #MEcfs could be a "compendium" of multiple diseases. (Keeping in mind that #pwME in this study met CC, Fukuda.) (3) #mecfsatnih19
Read 21 tweets
So many parallels to #pwme in Europe forced into graded exercise. Push people past their limits, then give a form of CBT to disabuse of them of the “false belief” that exertion is killing them. Here, put teens in pain in more pain and then forbid them from talking about pain.
Here is the original piece. This should always be a warning sign: “It mostly affects girls, though a small number of the cases are in boys” that we are about to see failure to diagnose lead to psychologization and medical abuse.
Doctor: “American medicine now routinely asks patients to rate their pain on a scale of 1 to 10, and treats it like an emergency, [this] has led to more pain in our society”
Read 16 tweets
Something I've noticed after a couple of years of working in #MECFS research at Stanford is how immediately (and perhaps unknowingly) patients try to convince me that their illness is real when they come in for a study visit. It breaks my heart because 1) of course it's real,
2) the fact that our health system has screwed over these patients so badly to get to a point where they are immediately on the defensive is a massive failure,
and 3) many patients don't know that I've sat in the seat they're in, and that I know how painful it is to fight an uphill battle with physicians who are basically laughing in your face
Read 5 tweets
1. thread.

Nice @FrontPediatrics paper providing guidance for docs and #pwME in the diagnosis and management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#MedEd #MedTwitter #chronicillness #chronicpain #SickNotTired…
2. #MECFS is commonly misdiagnosed as a #somatic disorder

#pwME "..have been humiliated or dismissed by other providers, so [doctors] will need to be.. nonjudgmental.. & acknowledge that #MECFS is not a #psychological condition but a real illness"…
3. #MECFS symptoms can be diverse, complex, fluctuate and overlap with many other conditions making the diagnosis difficult

This @FrontPediatrics paper lists 33 (!) co-morbidities commonly associated with #MECFS

#MedEd #MedTwitter #pwME #SickNotTired…
Read 8 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.


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

Read 45 tweets
18 myths & misconceptions of Post-Exertional Malaise #PEM in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#PEM (aka PENE, "flare" or “crash”) is seriously debilitating symptom caused by exercise

#SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd
1. #PEM is just tiredness


#pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance

@PNASNews #MECFS #MyalgicE #MedEd #medtwitter…
2. #PEM is not a real


“there exists no medical condition.. where exertion.. causes #immune/ inflammatory-related symptoms like sore throat, tender lymph nodes, or flu-like feelings, yet 60%.. of.. [#pwME].. reported these symptoms”

Read 20 tweets

The 10 publications below provide scientific evidence that patients with #MECFS have #brain abnormalities in #neuroinflammation, #metabolism, #neurological connections and blood perfusion

#pwME suffer from #chronicillness

#pwME are #SickNotWeak
1. These studies “provide evidence of #neuroinflammation in #MECFS.. as well as evidence of the possible contribution of neuroinflammation to the pathophysiology of #MECFS

2. This Australian study found abnormalities in the #brain MRIs and peripheral Blood Pressure and Heart Rate in #MECFS patients including the Vasomotor centre, midbrain and hypothalamus

Read 14 tweets
@Dan_Wyke Dan - you are spot-on …. Have been exploring this for some years … and this is what I have found: this was published Sept 2017…
@Dan_Wyke And what we have found is that no-one will engage in any discussion whatever about 'the effects of meds' that have been prescribed along the way … and that the most commonly prescribed (and cheap) meds are having disastrous effects...
@Dan_Wyke See this - and also e-letter responses:…
Read 5 tweets
Do you have Postural Orthostatic Tachycardia syndrome #POTS?

Approximately 25% of patients with #MECFS also have #POTS

This @FrontPediatrics study shows that a SHORT tilt table test fails to diagnose #POTS accurately

This large @FrontPediatrics study finds that only a full TEN MINUTE tilt table test accurately diagnosed ALL #POTS patients

nearly half of #MECFS patients have severe cardiovascular symptoms that require treatment/management

@FrontPediatrics study found:

25% of #pwME also had #POTS
17% of #pwME also had #orthostatic intolerance #OI
<1% of #pwME had fainting spells…
Read 3 tweets
The International Consensus Criteria for ME states: “Misperceptions have arisen because the name ‘CFS’ and its hybrids #MECFS, #CFSME and CFS/CF have been used for widely diverse conditions”. #pwME #MyalgicEncephalomyelitis
@EmergeAus “Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name.”
@EmergeAus “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”
Read 19 tweets
Some of the daft & unsolicited advice I’ve received over the years, from people who know significantly less about my illness & how it affects me than I do, but still, they have the answers!

#MyalgicEncephalomyelitis #MyalgicE #PwME #UnsolicitedAdvice #ChronicIllness #Disability
I should move out of (damp and mouldy) Scotland to a drier country - I’d lose my entire support network. I would no longer be eligible for UK disability benefits, and I won’t be eligible for social security in whichever country I move to. What will I do for money and support?
Take up meditation - I’ve tried, it makes me anxious. I have other methods of relaxation.
Read 25 tweets
👋🏼 just wanted to share with you a new diagnosis. As suspected, I have craniocervical instability. My skull is compressing my brainstem causing my breathing + other problems. I’m having surgery later this month to stabilize my skull + neck. Learn more:…
Craniocervical instability and atlantoaxial instability are a common complication of Ehlers-Danlos Syndrome, especially #hEDS. I don’t meet the criteria but it’s clear hypermobility is an important part of my clinical picture. #Nightingales
A handful of other #pwme have also been diagnosed with CCI/AAI in the past year including @jeff_says_that who, at one year post-surgery, considers himself in remission from both #POTS and PEM:
Read 11 tweets

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