Discover and read the best of Twitter Threads about #MECFS

Most recents (24)

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.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
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. theguardian.com/science/audio/…
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?

@4WorkWell
1.
"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?

2.
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.

3
Read 10 tweets
1/17
To @guardian,
You’ve got it very wrong this time. In publishing this tired, self-justifying defence of the #PACEtrial—and predictable attacks on patients and others who question this research—you are being used by the PACE authors in a last-ditch…

theguardian.com/society/2019/j…
2/17
…attempt to prevent their reputations from being washed away by the rising tide of research showing the many flaws in theirs. Why are you giving a platform to a promoter of discredited and harmful treatments for some of the sickest people in the world? Are you unaware…
3/17
…that the #PACEtrial is now used in biostatistics courses as a case study in how not to design a medical trial? PACE is not a story about harassment of scientists. It’s a story about junk science and the replication crisis in psychology. PACE is eminence-based not…
Read 17 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
mdpi.com/2075-4418/9/3/…
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
Thread:

#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
ja.ma/2xF3WNT
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
1. This is a very useful thread #MedTwitter because it tracks common reasoning errors that lead doctors to readily accept psychosomatic dx for #MEcfs and other contested conditions like #EhlersDanlos, #mito, #dysautonomia, #LymeDisease, etc.
2. Start with the duty that defines your profession @strauss_matt - to ensure that every patient with a need for med care (medical testing, treatment, or support) receives it when she seeks it from you. Mistaken psychosomatic dx violates that duty in every case where it occurs.
3. No doctor should have to be told to err on the side of medical caution. Your job requires (a) humility about the limits of dx science and (b) historical awareness of immense suffering caused by psychological explanations for #MS #epilepsy #PepticUlcer #Parkinsons #lupus etc.
Read 8 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
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
#DisabledTwitter please consider watching Voices from the Shadows, a UK documentary about patients being forced into Dr. Sherry-style graded exercise programs. My community has been shouting about this abuse for years, largely into the void: vimeo.com/ondemand/22513 #mecfs
There is a free code to watch the film. It’s harrowing. Proceed with care if you are a victim of medical abuse. Some of the stories are too shocking to believe but I am sure those within the community will have no trouble believing them.
And if you were outraged by NPR’s coverage of a barbaric chronic pain treatment, please consider amplifying the voices of people with #mecfs who are still fighting coerced/forced treatment and forced institutionalization. It is all the same fight.
Read 3 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
From the annals of things we used to know and completely forgot about. I just got tested for serum carnitine for the first time. I don’t know how this never happened before, but I was clearly deficient, am now taking levocarnitine and noticed immediate improvements.
Oh look, three studies from 1994-1995 on low serum carnitine in #mecfs: me-pedia.org/wiki/Carnitine Not enough science to start digging deeper and helping people feel better my ass @nihdirector.
Before we find “the biomarker” (how many diseases don’t have this and yet get on their merry way regardless) how about a consensus on what tests we should be running on everyone such that we can at least be symptomatically treating what is commonly and measurably wrong?
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
frontiersin.org/article/10.338…
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"

frontiersin.org/article/10.338…
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
frontiersin.org/article/10.338…
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.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

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

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
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

No

#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
pnas.org/content/114/6/…
2. #PEM is not a real

No

“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”

@PLOSONE #MECFS
dx.plos.org/10.1371/journa…
Read 20 tweets
thread

Remarkable @bmj_latest @BMJCaseReports report documenting the extreme lengths a bedbound patient went through to get a diagnosis of #POTS, #MCAS, #SIBO and #tachycardia

read her story here

#MedEd #MedTwitter @MayoClinic
casereports.bmj.com/content/2018/b…
2. After suffering for 16 years, seeing 19 docs with repeated misdiagnosis:

Her cardiologist couldnt diagnose #POTS

Her gastroenterologist couldnt diagnose #SIBO

Her immunologist couldnt diagnose #MCAS

Her neurologist referred her to a #psychiatrist!

casereports.bmj.com/content/2018/b…
3. Patient: the "neurologist was out of ideas and suggested I get a psych evaluation, which I declined"

the patient <referred herself> to @MayoClinic

#SickNotWeak #chronicillness #chronicpain #MedEd #medtwitter

casereports.bmj.com/content/2018/b…
Read 10 tweets
Thread:

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

#pwME

jnm.snmjournals.org/content/55/6/9…
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

#pwME

sciencedirect.com/science/articl…
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
gpview.co.uk/update-managin…
@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: bjgp.org/content/67/656…
Read 5 tweets
I own it. - Thread.

I had a job with a good salary, I was healthy and happy. I followed media and would hear people grumbling about benefits.

And in my head I would shout 'don't like it get a job'! Yes, I was 'one of those'.

Cont
Never having experienced the welfare benefits system I was naive, foolish, gullible.

In 2007 everything changed, rapidly. By 2009 I was unable to work. My physical disability did not sit well with me, this wasn't me, this wasn't going to be me. I was determined to get better,
Return to work. That didn't happen, I became depressed, suicidal and I took an overdose. Had to be resuscitated twice (in part I still wish they hadn't bothered).

I have had to fight and endure the humiliation of justifying my existence and literally beg for help from the state
Read 8 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

#pwME
frontiersin.org/article/10.338…
This large @FrontPediatrics study finds that only a full TEN MINUTE tilt table test accurately diagnosed ALL #POTS patients

#MECFS #pwME
frontiersin.org/articles/10.33…
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

frontiersin.org/articles/10.33…
Read 3 tweets
Here's my lastest update Twitter #Disability & #ChronicIllness Hashtags - previous update 10.17.18

Please share it.
I'll have a PDF version of this for download on my Ko-fi by this time tomorrow. Link at the end.
HASHTAGS FOR PERSONAL NARRATIVES

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

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 29 tweets
This study looked at 270 people with #fibro, a condition that receives even less funding than #mecfs and is still ridiculed by many MDs. 46% had spinal stenosis and 20% had Chiari malformation!! #Nightingales link.springer.com/article/10.100…
The authors conclude: “We recommend detailed neurological evaluation of patients with #fibromyalgia in order to exclude cervical myelopathy, a potentially treatable condition.” #Nightingales
There is a strong case right here that medicine is massively failing these patients by denying access to diagnosis and care *that it is already quite capable of providing.* #Nightingales
Read 11 tweets

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