Discover and read the best of Twitter Threads about #MEcfs

Most recents (24)

#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.… 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?…
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…
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
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
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!
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
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]…
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 47 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 ( 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
My husband and I both got sick with what we think was #COVID19 in late March. It took us each 2.5 months for our symptoms to completely resolve. It may take me, someone with a history of #MECFS and #MCAS, even longer to fully heal. Here are some things I’ve observed.
Our onsets were, at the time...odd. We never spiked fevers and had only “mild” lung symptoms. Our symptoms never fully announced themselves in the form of an acute illness but also took forever to go away. The flu is a thunderclap. This was more 2.5 months of daily gray, drizzle.
My husband’s illness began on March 22 with an upset stomach. Then, he started falling asleep for hours at a time in the middle of the day. At first, we thought it was a stomach bug. One day, he walked up a hill he‘s walked many times before. It winded him. His chest was tight.
Read 63 tweets
I wrote another epic thread (QT’d here). It has 74 tweets, twice the number it took me to wrestle with the nature of evil, which tells you just how complicated the topic of surgery + #MECFS is 😂. I’ll use this new thread to answer questions.
This is wonderful. A NS I consulted with at Stanford told me a lot of his patients wear cervical collars when they get viral infections. I’ve heard patients say neck instability gets worse when they have infection.
The common demnominator may be inflammation. Perhaps it is possible to improve stability by reducing inflammation? e.g., by treating infection, treating the guy, or taking mast cell stabilizers/anti-inflammatories? For some, that may be enough. See, e.g
Read 11 tweets
I don’t know how to get the word out about this. I am concerned about #MECFS patients who are a) having craniocervical fusions b) in Europe and c) are not actively engaged in patient groups on Facebook. [1]
My primary concern is that a significant proportion of patients who have fusions experience an initial improvement, but then have worsening symptoms roughly 5-7 months after surgery.[2]
In many cases, this is due to the “unmasking” of tethered cord syndrome, a condition many patients with craniocervical instability have. [3]…
Read 76 tweets
there is a whole 12-page "expose" on how horrible #mecfs patients are from the view of the researchers and scientists in the CBT/GET camp. It is horrendeous. They completely get to tell their narrative... 1/
and never get properly confronted by the fact that they are the _minority_ in the international ME field, their research is so poor it tells ut nothing, and the little their research tells us usually actually is the opposite of what they claim. 2/
They are in their own echo-chamber when it comes to their research. They only collaborate with and attend conferences with others having their same view. They never attend the largest conference for #mecfs, only the small ones sharing their hypotheses 3/
Read 12 tweets
@meganranney 1. Many post-Covid patients still feel exhausted after 60 days and haven't returned to their previous level of health. A small amount of exertion wipes them out for hours. This is known as Post-Exertional Malaise or PEM or crashing.
@meganranney 2. An unknown percentage of these patients may never recover and will go on to develop Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome. #MECFS
3. Support groups for thousands of these patients have already appeared on Facebook.
@meganranney 4. Numbers of patients with #MECFS could double in a few years, putting great stress on disability support.
5. There is no treatment for #MECFS. Rest and lifestyle management are key.
6. Very few doctors feel confident diagnosing, treating or counseling #MECFS patients.
Read 14 tweets
@TomKindlon Thanks for sharing this article, Tom. Our @4WorkWell group proposed a heart rate formula in 2010 that was evaluated in the study. The threshold was intended to help people with #MECFS avoid exceeding their heart rate at ventilatory anaerobic threshold.
@TomKindlon @4WorkWell I think it’s important to point out the equation we proposed was never intended to accurately predict heart rate at VAT. It was intended to slightly under-estimate heart rate at ventilatory anaerobic threshold. The thought was this underestimation would provide a safety margin.
@TomKindlon @4WorkWell The authors of the present study, very helpfully, provide us with some important subject-level data in Figure 1. These data can help us get an idea of whether the formula we proposed in 2010 actually underestimates the heart rate at lactic acid threshold, as originally intended.
Read 14 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
The “OMG, #COVID19 can cause long-term illness, possibly long-term disability, who knew such a horrible thing was possible?” articles stir in me so many mixed emotions.
I feel sorry for the people who are suffering from this and the uncertainty they face, especially those being gaslit by doctors or family members (apparently if you don’t snap back after two weeks, it’s “stress” or “anxiety”), or who are forced to go back to work too early.
I feel a sort of detached bemusement over how hard it is—for all of us—to pay attention to that which does not personally affect us, until it does. I have come to accept this as part of the human condition.
Read 14 tweets
#Thread for #MEAW2020

So it's #MEAwarenessDay #MEAwarenessWeek. That's the disease #MyalgicEncephalomyelitis if you don't know.

My Queen @NicolaCJeffery lives with this. We've been treating her for 15 months now at a cost of thousands of pounds, because the #NHS won't help 1/7
2/7 Or rather it will help, but only by telling the 250k+ people who live with #MEcfs in the UK that it's 'all in your head'.

Today was a milestone for Nic. We've now reduced her from 78 tablets & 9 oral solutions a day to 40 and 4.

I'm not sure many people really 'get it'
3/7 Can you imagine taking 78 tablets A DAY? That's what it's taken to try & get her better. But it's come at a huge cost.

It's been the hardest thing me & her have ever done & our lives have been HARD. #Lockdown? Hard? You've no idea. Some people helped with fundraising, so TY
Read 7 tweets

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