Discover and read the best of Twitter Threads about #MECFS

Most recents (24)

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
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
👋🏼 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: medium.com/@jenbrea/a-new…
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: mechanicalbasis.org
Read 11 tweets
The thing that really upsets me about the BPS/MUS brigade is how the whole movement aims to discredit the intelligence of patients and our ability to recognise symptoms in our own bodies. The assumption we can't tell the difference btwn anxiety, deconditioning, and illness 1/
I am very aware (note: NOT 'hyper-vigilant') of my own body. I know when I am anxious, when I am sore because I haven't moved enough, and when I am sore and ill because I've moved too much. These three things all feel different. The BPS model assumes we don't know this. #MECFS
They say we are just not 'science literate' which is also insulting. I have a Master's degree, PhD and am doing a science degree. And I can say the model is fundamentally flawed from an epistemological, phenomenological AND methodological perspective.
Read 12 tweets
I’ve been amplifying the #DoctorsAreDickHeads hashtag the last few days but haven’t actually shared my own story. It starts there, traverses through #DoctorIRespect and #DoctorsAreAwesome and ends with #DoctorsAreHuman (something for everyone!)
And of course it is not the entire profession, but the profession has a major systemic problem when it comes to disabled patients and those with #chronicillness that it seems to have little to no knowledge or self-awareness of. THAT – not the hashtag – is the problem #medtwitter
#MedTwitter, your patients have been trying FOR YEARS to speak out on hashtags like #spoonies #pwd #medtrauma and no one has listened (on this platform) at this scale until patients got....confrontational #DoctorsAreDickheads
Read 46 tweets
Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.

Amplifying stories

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 16 tweets
Oooh: this is your brain on #MECFS : up to four times the standard amnt of lactate. Remember that Nakatomi study and those lactate me vs fibro vs major depressive disorder vs... confirmation! Awesome, Younger. (1/4) #pwme @MEActNet #MECFS18
SO GLAD he included this too! Brain on fire: #pwme brains run hot. Usually about 1F diff— but sometimes as high as 103F! “This will make a person feel very sick,” he says... (2/4) #pwme @MEActNet #MECFS18
Positron electron tomography (PET) scan replicates older research to show same areas overactive. New, more effective markers mean better, more trustworthy results. (3/4) #pwme @MEActNet #MECFS18
Read 4 tweets
Jarred Younger up now. Neuroinflammation in #mecfs. We’ve all gotten inflammation diagnoses in the body (arthritis, e.g.) but never brain inflammation. Hard to diagnose! So how can we make that dx easier? (1/5) #pwme @MEActNet #MECFS18
Hard to measure inflammation in a living person? Must be non-invasive, must be through and examine the whole brain. (2/5) #pwme @MEActNet #MECFS18
Microglia — bottom right is in an inflammatory state. Releases cytokines that cause ‘sickness behavior’. It makes you feel awful: that’s its job! Slow down to recover. (3/5) #pwme @MEActNet #MECFS18
Read 6 tweets
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
Read 12 tweets
Imagine an experiment. You take a healthy person and put them in a bed. You tell them they’re not allowed to sit or stand up, at all. If they do, the next day they will be strapped to electrocution devices to stimulate pain, and keep awake long past exhaustion without knowing—
when they’ll be allowed to sleep. They will also have to cancel/ miss out on any activities they had scheduled for the next five days. They’re not allowed to move around too much, if they do, the above applies: Electrocution and sleep deprivation for an indefinite amount of time.
I wonder what they’d do, how they’d feel.
Read 12 tweets
.@SarahbaxterSTM's argues that #fibromyalgia, #mecfs, #lupus, #depression, self-harming and #anorexia are caused by female ambition and fragility.

What's c. 1880 is new again.

thetimes.co.uk/article/kirsty…
This is just so silly. In the 19th century, there was a panic in the medical profession (and among social commentators) about women becoming ill with neurological and "nervous" conditions because they were overworking their brains/nerves, which were naturally weaker than men's.
This “fact” was used to bolster the argument in favor of stopping women's formal education after age 16 and most certainly not letting them enroll in university.
Read 26 tweets
The heavy-handed (totally out of context) physician commentary on the cases of patients they have never seen or interacted with is so irresponsible. #Afflicted
I have *never* heard of some of the doctors commenting on Jamison's case. This means they don't regularly see ME patients, don't research the disease, and have zero clinical or research expertise. #Afflicted
They filmed at a Stanford symposium that included top researchers from around the world, yet decided to use totally unrelated, nonexpert interviews to comment on Jamison's case in order to convey a POV that fit their narrative. #Afflicted
Read 106 tweets
#IIMEC13 - I've spent a week in London helping out at the @Invest_in_ME conference.

This was it's 13th conference, and it's grown from a small meeting to a whole week of talks from researchers/scientists in different stages of their careers... 1/7
#IIMEC13 - There's been a lot of science. A lot of talking. There's been scientists from different #biomedical fields offering their expertise.

The dedication/determination from researchers was very clear throughout.

For some reason, #MEcfs is political minefield... 2/7
#IIMEC13 - The people who suffer from this awful disease have been left to suffer for years by unbelieving professionals, bad advice and charities who are happy not to rock the boat and challenge them.

These sectors don't deserve the publicity. The people who help DO... 3/7
Read 7 tweets
I am probably going to feel like shit for the rest of my life (unless something dramatically changes) because “research takes time” when you fund it with the change you found under the @NIHDirector’s sofa cushions.
And I have a lot of life left. Granted, probably less than I thought I did when I was 20 but who really knows because we know absolutely nothing about the course of this disease over a life, what the long run effects are of having non-functioning natural killer cells...
Maybe getting diagnosed with cancer at 28? But I digress...
Read 9 tweets
The controversy about #MECFS is just an echo of the general reproducibility crisis in medicine and psychology. journals.plos.org/plosmedicine/a…
We cannot agree on the nature of an illness, if we don’t agree on how to make science.
Why is systematic bias, outcome switching, argument from ignorance, and causality inferred from correlation accepted in the BPS paradigm?
Read 4 tweets
Today is the 10th anniversary of the day that I became housebound with severe #ME. To mark the occasion here’s a thread:

10 years ago I came home from work unbelievably overwhelmingly exhausted. #mecfs #MillionsMissing #MyalgicE #meawarenesshour
2/ I thought 2 weeks off would fix it. It didn’t. After 6 weeks I was desperate to go back to work.
I held a fellowship in bio-nano-technology at a Scottish University. I tried a phased return starting with 1 hour per day. Twice. Each time I crashed and became more unwell.
3/ Since then I have been 95% housebound- it is rare for me to leave the house for more than 1 hour per week, and common not to leave the house at all for 3-4 weeks.
Still, I’m lucky – I’m not bed bound, like so many.
Read 12 tweets
According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake.
So when in #unrestfilm I say, "I can feel my brain pushing out my eyeballs" that is apparently true.
Of course I have been saying this for years, most notably when at the @GlendaleHosp ER last month, where I was diagnosed with "anxiety" and torticollis (tilting of the neck), even though the issue was that my neck COULD NOT TILT.
Read 18 tweets

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