Discover and read the best of Twitter Threads about #MECFS

Most recents (24)

Young & healthy folks: I know the media has told you that you need to be safe to protect the high-risk around you from #COVID19 . But please, you must protect *yourself* also. Here's why – a thread:
6 years ago, I was a young, healthy, active person when I got a virus. 1/8
#MECFS #postCOVID
The virus itself wasn’t a severe case. I was never hospitalized from it. 2/8
#postCOVID19 #MyalgicEncephalomyelitis
Read 9 tweets
If I could wave a magic wand:
– we would prove that intracranial hypertension (as measured by ICP bolt) is common in our pt populations, more often than not w/ normal LP opening pressures, w/o papilledema
– we would prove that occult tethered cord is common and runs in families
– we would learn whether we should untethether these kids as kids, if that might help them avoid the hell to come
– we would prove that you can get recurrent leaks that imaging will never catch
– we would understand the relationships between #MECFS #EDS #MCAS #POTS #Fibro, without which we will never be able to get to *prevention*
– every GP/PCP would know each of these diagnoses cold and could refer you to...actual specialists
Read 6 tweets
#MECFS #millionsmissing
Wisst ihr, wovor ich als #LongCovid-Patientin die größte Angst hatte und was mich letzte Woche sehr erleichtert hat? (1/12)
Ich hatte Angst vor #MECFS. In Woche 10 musste ich mich im Büro oft zum Ausruhen auf den Boden legen. Aber es wurde besser. In Woche 12 musste ich wegen kognitiver Einschränkungen ins Krankenhaus. Ihr wisst, wie sehr mich diese Erfahrung mitgenommen hat. (2/12)
Als ich wieder denken konnte, hatte ich Angst, dass es eine Folge geistiger Anstrengung (zu früh wieder angefangen, zu arbeiten?) gewesen sein könnte und dass es das nächste mal nicht wieder besser werden würde. (3/12)
Read 12 tweets
Reasons why, when doctors suggest my #mecfs is anxiety or depression, I firmly disagree. It's not because I deny that anxiety and depression are valid and debilitating conditions. It's not because I would be ashamed to admit if I had either.... 1/
... It's not because I am delusional. It's because my mood is good in general, I feel calm in general, and there is very little correlation between my mood, mental state and physical symptoms. Here is my mood diary vs physical symptoms scores. Green is good, red is bad:
Occasionally when my symptoms are really bad it dampens my mood. Occasionally I get anxious about accessibility issues, or upset about not having the career I would like, or having to fight to access dignified healthcare. But in general, my mood and mental state are good. 3/
Read 9 tweets
Why is it so hard for patients to get doctors to “believe” they’re sick?

Corollary: why do so many doctors seem intent on ignoring data, in the form of massive numbers of very ill pts they shoo out the door?

Is the idea to just...never learn about “new” diseases ever again?
I also hope the balance of research shifts to include much more investment in #LongCovid relative to acute COVID. Part of why there is so much more research on acute COVID (other than the dire urgency) is that many of these studies are done in hospital settings.
Doctors are learning an astonishing amount in short periods of time by OBSERVING their patients and constantly sharing information. When you gaslight a patient or send them out of your office, you’re saying, in essence, “nothing to see here.”
Read 7 tweets
Dear medical profession: please get your act together on this. It’s been a few hundred years. You’ve had more than enough time.

@AmerMedicalAssn needs to speak out against this behavior, for the sake of #LongCovid patients and for ALL patients.

Thanks.

nbcnews.com/news/us-news/t…
Those of us who became ill with #MECFS after other outbreaks or as sporadic cases knew #LongCovid was coming. There is no reason @CDCgov @NIH @AmerMedicalAssn or @NICEComms should not have also been—from day one—well aware, but for the profound, long-standing disinterest.
In 2016, I gave a @TEDTalks about what happened when my symptoms were dismissed as “just anxiety.”

@AmerMedicalAssn I called for doctors to be curious. To embrace a *different* set of values than the ones that currently guide the practice of medicine.

ted.com/talks/jennifer…
Read 11 tweets
2/n

“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
3/n

“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
Self care advice is almost always completely out of touch with the realities of being disabled & chronically ill.

It's ironic because we often need those skills the most, after years of having to ignore our well-being in order to survive under capitalism.

#NEISVoid #MECFS
Self care is also not clear cut when you're chronically ill. Many things that are "good for us" can be harmful.

Ie. Showering daily helps my mental health, but it makes me crash, which in turn worsens my mental health.

It's a balancing act & we have to figure it out on our own.
Another example: doctor visits.

At some point, I had to stop chasing diagnoses & potential treatments bc it was all too much exertion & stress.

But try explaining to most people that going to the doctor is potentially harmful for your health.
Read 3 tweets
#LongCovid #covid1in20 the #mecfs community needs your help! For decades, ME patients have been left permanently disabled (wheelchairs, bedridden) by grades exercise therapy. Fir decades we gave reported these harms and asked for the treatment to be removed 1/
from the NICE guidelines. In 2017 NICE finally agreed to review the current guidelines which were 10 years old at the time. The new guidelines won't be published until 2021. We have been asking NICE since 2017 to add a warning to the front page of the ME/CFS treatment 2/
guidelines, to warn in the meantime that GET can cause harm to ME/CFS patients. We have sent multiple stories & evidence from thousands of patients who have been made much worse by GET, and asked multiple times for NICE to issue a warning to prevent further harms. 3/
Read 7 tweets
Scientific understandings of diseases have never been static but always subject to change and revision. Often, big scientific leaps take place in times of crisis. My prediction is that the wave of #LongCovid-19 will fundamentally change how we view post-viral conditions. 1/
I believe that the “cognitive era” of post-viral conditions will find its end rather soon. That is not to say that CBT won’t have its place in the treatment of patients. It can be crucial in helping them cope with their illness. But it cannot solve its physical causes. 2/
Evidence for the biological basis of diseases such as #MECFS is mounting and promising early developments of diagnostic blood tests have been recently published in world-leading journals such as PNAS. pnas.org/content/116/21… 3/
Read 6 tweets
Eh, eh joven..esto del #COVID19 SÍ QUE VA CONTIGO
🔴Sabíais que el síndrome de #fatiga #posviral tiene mayor prevalencia en jóvenes?
🔴Sabes que los cuadros d #covidpersistente son más frecuentes en jóvenes? medicinaysaludpublica.com/fatiga-posvira…
Aunque no lo hagas por los demás hazlo por ti
#Joven (o no tanto), #millenial cuando estés con tu grupo o sin tu grupo fuera de casa piensa que en España hay muchas personas que siguen enfermas cuatro meses después de pasar #COVID
Imaginad parar vuestra vida cuatro meses, y sin saber cuándo estaréis bien. #covidpersistente
Los muertos en #USA por #COVID19 son mucho más jóvenes que en Europa
O sea, joven....que el tema del #covid SÍ va contigo
economist.com/graphic-detail…
Read 9 tweets
@bennessb Yes it is. Inaccuracies and flat out lies. As a ChronicLyme/PTLDS patient who's been denied testing, treatment, & support for over 20 yrs this is a painful topic. They are still using the SAME flawed testing that missed my dx in 1993. The ELISA that misses around 50% of cases.
@bennessb I fucking hate the CDC for what they've done to me & my fellow Lyme warriors. Drs run out of business. Some that we travel to see across more than 3 or 5 state lines bc they actually were helping & took insurance. Sorry. I want to burn things down when i think of the yrs stolen.
@bennessb We've been trying to get actual patients & Lyme literate drs on the CDC panel that makes the treating guidelines for over 10 yrs. We still can't be heard. We still can't sit at the table. It's maddening.
Read 27 tweets
Wenn ich einen Twitterthread schreibe, muss es wirklich wichtig sein, also bitte lesen:

Mehr durch Zufall bin ich auf das oft unvorstellbare Leiden von Menschen aufmerksam geworden, die an Myalgischer Enzephalitis (ME) leiden, landläufig unter der verharmlosenden Bezeichnung
"Chronisches Erschöpfungssyndrom" (CFS) bekannt. Menschen mit #MECFS leiden in erster Linie an permanenter, schwerster, bleierner Erschöpfung selbst im Ruhezustand, die die Erschöpfung ("Fatigue) von Krebspatienten unter radikaler Chemotherapie oft noch übertrifft. Sie
können oft nicht mehr ihr Haus oder sogar ihr Bett verlassen, können nicht arbeiten und so gut wie kein Sozialleben führen. Einfachste Tätigkeiten wie Zähne putzen oder sich im Bett umdrehen können die Energiereserven von Tagen verbrauchen, ein Gespräch mit einem Angehörigen
Read 22 tweets
HOT: Wanting everyone to have access to affordable health care.

NOT: Romanticizing existing socialized health care systems in Europe and pretending they don't screw over disabled people constantly.
I want to be clear that no system in the world is *good* for people with my condition (#MECFS, with one of the lowest quality of life scores of any disease). But the US is the *least bad* place for people with my condition.
This is (tl;dr) b/c nobody wants to research us, so the treatments that actually help us are often experimental and generally not covered by Medicaid/Medicare or other gov't health care systems (like the NHS). However, they are *sometimes* covered by private insurance in the US.
Read 8 tweets
Without wishing to subtweet anyone, I am seeing much discussion of #LongCovid & similarities (or not) with #MECFS. I can only speak of my lived experience with the latter & the misconceptions I have seen about symptoms & diagnosis, so here is a thread about those things...
Firstly, my diagnosis of #MECFS was simply based on ruling out more obvious causes through the use of tests (I had a good number of those, but probably far fewer than many people). To me, this means that #MECFS could be many different things for everyone with the same diagnosis.
Secondly, my symptoms began not in response to a virus but to vaccinations. There was no live virus attacking my organs, no illness that I was suffering, no post-viral fatigue. Nonetheless, I experienced many of the symptoms reported by #MECFS & #LongCovid sufferers.
Read 11 tweets
#LongCovid #MitCoronaLeben #COVID19
Mindestens 10% der Coronapatienten haben einen langen Verlauf. Darüber wird jetzt vermehrt gesprochen und es wird als #PostCOVID Syndrom bezeichnet. Viele Symptome überschneiden sich mit #MECFS, #PVF und #POTS. /1
In einigen Fällen wird wahrscheinlich eine postvirale Fatigue vorliegen, wie sie durch jede Viruserkrankung hervorgerufen werden kann. /2
Allerdings birgt eine vorschnelle Diagnose die Gefahr, dass andere Ursachen übersehen werden können. So können diese Symptome zum Beispiel auch durch kleine Thrombosen erklärt werden. Außerdem ist es ja noch nicht einmal sicher, ob es wirklich post COVID ist oder vielleicht… /3
Read 24 tweets
Heute ist mein dritter #Geburtstag, seit ich nach einer Virusinfektion so krank geworden bin, dass ich die eigene Wohnung kaum mehr verlassen kann. Man sagt, Kranke hätten nur einen Wunsch; ich habe aber sogar sehr viele. Und mindestens einer davon wäre sofort erfüllbar.
Natürlich wünsche ich mir, wieder gesund zu sein. Wieder mein Leben führen zu können, wieder meinen beruflichen Plänen nachgehen zu können, meiner Familie, meinen Freunden und vor allem @loyal_isabella auch außerhalb der Wohnung begegnen zu können.
Aber bis dahin wünsche ich mir z.B. auch, einen Arzt zu haben. Der meine Krankheit #MECFS wenigstens in Grundzügen versteht, der die Schwere der Krankheit erkennt und mir wenigstens dort, wo es geht unterstützend zur Seite steht, wenn schon sonst keine Hilfe möglich ist.
Read 12 tweets
Update: i did, indeed, go to the ER. Heart monitor listing v hig...Pulse ox reading HR 151Image
Me: what day did we go to the ER?
Ky: this week?
Me: touché

#COVID19
On the heels of THIS tweet, i should probably say that #COVID19 is not great but having a wheelchair changes *everything*

Read 105 tweets
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?

THREAD
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
buff.ly/2CXH6Hj
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

…nslational-medicine.biomedcentral.com/articles/10.11…
Read 11 tweets
Alright, I’m just going to announce this: cognitive behavior therapy CBT is NOT an appropriate first-line treatment for poorly understood physical conditions such as #insomnia, #chronicpain, #MECFS, etc. It is a wastebasket that has enabled medicine to toss #patients a 1/
wastebasket because they don’t know any to admit they don’t know what’s wrong, which causes the conditions themselves to be psychologicalogized, minimized and trivialized. This has a chilling effect on biomedical research for these conditions. The numbers touting the success 2/
of CBT are easy to fudge, given the circular reasoning the theory is largely based on. Not to mention the damaging effects to patients when they supposed didn’t “think” hard enough to get better. Since #PatientExperience often has no credibility with medical practitioners, we 3/
Read 5 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!

pubmed.ncbi.nlm.nih.gov/32568148/
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

pubmed.ncbi.nlm.nih.gov/32568148/
Read 9 tweets
Petra Klinge’s talk on tethered cord syndrome blew my mind. It‘s given me a deeper understanding of how tethered cord syndrome might play a fundamental role in the patholophysiology and symptoms of a subset of #MECFS and #EDS patients. THREAD [1]
Tethered cord syndrome is a cluster of symptoms that develop when the filum terminale, a string of connective tissue that links the end of your spinal cord to your sacrum, is either inappropriately attached to your spinal canal or is too tight. [2] me-pedia.org/wiki/Tethered_…
This tethering exerts a downward force on your spinal cord. It’s why some neurosurgeons think tethered cord might predispose people to developing craniocervical instability/atlantoaxial instability (CCI/AAI) or symptomatic Chiari later in life. [3]
Read 51 tweets
I have been engaging with some people with functional neurological disorder (FND) diagnoses. FND is the new name for conversion disorder. They were upset about this thread and how it might stigmatize people with FND.
The last thing I would ever want to do is stigmatize other patients or disabled people. However, it's challenging to figure out how to talk about FND in a way that is not stigmatizing when misdiagnosis is *rampant* and *harmful.*
Furthermore, after digging into FND Hope’s website and list of symptoms (fndhope.org) I can only conclude that if these symptoms are being framed as FND symptoms and differential diagnoses of #MECFS, #EDS, #MCAS, #POTS...
Read 58 tweets
Ok I'm about to ask for something that's going to sound really ridiculous, but hear me out.

People with #MECFS and/or #CCI (confirmed or not) who aren't getting much treatment right now, will you help me answer a question? It involves ice cream. Yeah.

I'll continue in thread...
I would like to see how many other people experience the same interesting thing as me. I'm also hoping to figure out if it has anything to do with CCI.

The basic idea: Rapidly eating dense vanilla ice cream with soymilk is basically acting as an ice pack on my brain stem.
I warned you, it sounds ridiculous.

Anyway, it's kinda like a really chunky, thick milkshake. I eat it pretty quickly, but *steadily*, staying just on the line of "brain freeze" without actually crossing it.

It makes me feel SIGNIFICANTLY BETTER for a short period of time.
Read 13 tweets

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