Discover and read the best of Twitter Threads about #pwme

Most recents (24)

1/ This is important. The supplement is oxaloacetate. The safety profile from this pilot merits urgent additional study in #LongCOVID and #pwME. The dose it’s currently sold in as a medical food is 500mg twice a day and it’s $500 for 90 capsules. Paper: ……
2/ The company that sells it is Terra Pharmaceuticals:…

They sell the same product but 100mg dose of oxaloacetate mixed with 150mg vitamin C under 2 brands: beneGene and newer Jubilance (marketed for PMS) that can be purchased @Amazon for $50 for 30 tabs.
3/ Given this initial data and anecdotal information from the community, this is something that has the potential to help a lot of people. Short term safety looks optimistic. But supplements are not regulated & the cost is out of reach for MANY people disabled by ME or #LongCOVID
Read 6 tweets
So, I've seen this coming up a few times recently and I feel like it's really important for #pwME to be aware that episodes of intermittent paralysis or muscle weakness could be cataplexy, which is a symptom of (some) narcolepsy, which in turn can be secondary to MCAS 🧵
If you have #MyalgicEncephalomyelitis and you experience intermittent paralysis or muscle weakness, especially if you also score 10 or higher* on the Epworth Sleepiness Scale, you need to be assessed by a sleep specialist who's familiar with narcolepsy.…
*10 is kind of a borderline score - some clinics will call it mild excessive daytime sleepiness and others will call it high normal daytime sleepiness and put the cutoff at 11
Read 18 tweets
New from Spain:

"The use of oxygen as a possible screening biomarker for the diagnosis of chronic fatigue [#CFS]"…

Involved looking at "the mean % of oxygen use in the aerobic-anaerobic transition phase or isocapnic buffering (IB)"


"The study of the combination of the factors O2 max, IB duration, and mean % of O2 use in IB support the validity of these as a screening biomarker for the diagnosis of CFS with a predictive power in our sample of over 90%."

#ChronicFatigueSyndrome #MyalgicEncephalomyelitis

"The results obtained make it possible to propose the confirmatory screening of the #CFS with a single laboratory test, and not with the 2 sessions of the most commonly used procedure currently with the importance that this stress reduction factor has for affected population"
Read 3 tweets
New from Japan
“Clinical Characteristics of #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS) Diagnosed in Patients with #LongCOVID…
“The overall prevalence rate of ME/CFS [in #LongCovid] diagnosed by three sets of #MECFS criteria…was 16.8%”
“most frequent symptoms in #ME/#CFS patients were general fatigue & post-exertional malaise (89.4% of patients), headache (34.0%), insomnia (23.4%), dysosmia (21.3%) & dysgeusia (19.1%). Dizziness, chest pain, insomnia & headache were characteristic symptoms related to #MECFS

“The male to female ratio in #ME/#CFS patients was equal in the present study [48.9% vs 51.1%] although #MECFS was generally more common in women in previous studies”

#MyalgicEncephalomyelitis #LongCovid #PwLC #ChronicFatigueSyndrome #PwME #CFSME #SEID #postviralillness
Read 4 tweets
It's 3rd anniversary of our paper
"Monitoring treatment harm in #MyalgicEncephalomyelitis / #CFS: A freedom-of-information study of NHS specialist centres in England"…
Hopefully it will influence, among other things, #LongCovid clinics


Summary article for laypeople:
"Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" (June 2019)…

#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

I searched but couldn't find a legal copy online of "Monitoring treatment harm in #MyalgicE/#ChronicFatigueSyndrome ..." that others can access so I uploaded here… what we submitted to the journal which is something we own the copyright on.

#MEcfs #CFS
Read 4 tweets
Today I heard back from a neurosurgeon who diagnosed me with:
- Jugular stenosis via C1
- Styloid hypertrophy
- Craniocervical Instability
- Pending further investigation: a tethered spinal cord

This is not a coincidence.

#longcovid #mcas #pots #mecfs
I do not have a known collagen disorder (genetic tested) nor do I am I hypermobile.
I should add that for the CCI, I’d need to complete invasive traction to fully confirm that dx. However, my measurements, strongly suggest CCI - and would be inline with my symptoms.
Read 12 tweets
New Zealand:
“Scientists studying potential link between [#ChronicFatigueSyndrome] & #longCovid struggle for funding”…

On Prof Tate & his research team. He seems like the sort of scientist we really want in field.

#MEcfs #PwME #MyalgicE #CFS #CFSME

“A small Dunedin-based team of researchers are critical to
understanding fatigue disease in New Zealand, but they might not be
around in another year.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #MEcfs #CFS #PwME #PwLC #MyalgicE

“Emeritus Professor Warren Tate says it took two decades for #chronicfatiguesyndrome research to be taken seriously, yet after a decade of good work it is still a mission to secure funding.

As of this week, they still didn’t have the funding to continue in 2023”

#MEcfs #CFS
Read 10 tweets
An uns Patient*innen (#MECFS) wurde der Auftrag herangetragen, als Expert*innen in eigener Sache Ärzt*innen unsere Erkrankung möglichst einfach zu erklären (*). Ich fange mal mit der

💠orthostatischen Intoleranz (OI)

an. Über das faszinierende Phänomen gibt es viel zu sagen.
(*) Gerne RT, ich hab ja nicht so viele Follower.

#MEAwareness [die „hour“ habe ich verpasst]
Wie ist die OI definiert? Allgemein versteht man darunter die Verschlechterung von Symptomen in aufrechter Position. Sie kommt in den drei gängigsten #MECFS-Kriterien (CCC, ICC, SEID) vor, ist aber in keiner von ihnen Voraussetzung für die Diagnose.
Read 24 tweets
I have created an email template to be sent to expressing concerns about the RECOVER study for #LongCovid. It can be copied/pasted & sent as is (please add your name at the end, after sincerely, before references) or personalized. (1/3)…
It is written from the view of any stakeholder, which (in my opinion) means it can be sent by #pwME, #NEISvoid, anyone w/ illness pre-Covid who stands to benefit from this research (even outside the U.S). Also, caregivers/family, researchers, HCPs. (2/3)…
It should take only a few minutes to send. At the very least, @NIH should hear from us. I would encourage people outside the community to read it to learn of current ongoing issues. (Will pin this tweet for a bit to make it easily found.) #FBLC (3/3)…
Read 4 tweets
Heres one for my #pwME #MECFS #LongCovid people. When confronted with the constructed image of Wessely as too decorated to be wrong, remember this guy...

"Malaria Therapy [was] the 20th century practice of deliberately injecting patients in asylums with malaria to induce

fevers and convulsions which were believed to then cure the patient of madness. This therapy earned Dr Julius Wagner-Jauregg a Nobel Prize and this practice continued into the 1930's according to Stetfer and Watson 2016."

Extract from Sexy But Psycho by @DrJessTaylor

Confirmed it here:…

So he literally won a Nobel prize for his cruelty (first time the prize for Medicine had ever gone to a Psychiatrist too) but his work was discredited & abandoned later.

#PACETrial wasn't even close to that lauded. We can do it.

Read 4 tweets
🧵Umfrage für #pwME zum Thema Schwebebehinderung für die #MEawarenesshour.

Es ist bekannt, wie schwer man mit #MECFS einen (angemessenen) GdB bekommt.

Das Thema verdeutlicht das Stigma, da ja GdB an tatsächlichen Einschränkungen orientiert sein soll und nicht an der Diagnose.
Der Einstieg... (insgesamt 4 Fragen, aufpassen bei 2a-2d❗)

Wer es nicht kennt, Umfragen sind bei Twitter ANONYM!


Interessant wären Kommentare, warum bislang zB kein Antrag erfolgte.

⚠️ Ich habe mit "MILDER" Verlaufsform...
Read 10 tweets
1/ According to latest ONS figures, 2M people in the UK now have Long Covid. Between 50-70% meet diagnostic criteria for #MyalgicEncephalomyelitis, a serious condition notoriously neglected & misunderstood by medical professionals.

Medics, read on for important information 🧵
2/ Thank you @AnilvanderZee for making this video. I want medics watching to understand that although Anil looks in good health, I can assure he is not. The exertion used to make this video will have triggered a ‘crash’
3/ I have experienced this for myself. Prior to covid I was a fit and healthy 35yr old, no comorbidities, regularly working 12hr+ shifts all day on my feet.
Read 26 tweets
#URGENT Twitter, I need your help-my health is critical I travel abroad to recieve trx in 4 weeks as a #pwME- An anonymous donor has covered the cost of my #HelpApheresis trx🙏🏽🦋 We are Rapidly trying to raise costs co-trx, accommodation, ✈ & care costs.… ImageImageImageImage
I am severely disabled. I have been since the onset of my illness. I suffered rapid deterioration and I'm now suffering widespread structural degeneration after being gaslit heavily for the past 8yrs. This is a chance to Save My Life. My health has been critical all year.
I have been in and out of A&E all year referred there by my specialists doctors and the ambulance services for emergency plasmapheresis treatment and they keep sending me home because I'm immunocompromised I wouldn't be immunocompromised if they actually treated me.
Read 41 tweets
New study out of Chicago that examined college students before, during, & 6 months after mononucleosis.
"Pre-illness data reveals differences in multiple metabolites and metabolic pathways in those who do and do not recover from infectious mononucleosis."
"Metabolic pathways related to energy production, amino acids, nucleotides, nitrogen, lipids, and neurotransmitters in myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) may contribute to the pathophysiology of ME/CFS."
"Examining pre-illness blood samples, we found...
"...significant detectable metabolite differences between participants fated to develop severe ME/CFS following IM versus recovered controls. We identified glutathione metabolism, nucleotide metabolism, & the TCA cycle (among others) as potentially dysregulated pathways." #MECFS
Read 5 tweets
1/7“The cardinal symptom of ME/CFS – PEM or post exertional exacerbation of symptoms.
……the fact that by definition, patients with ME/CFS are made more ill by aerobic exercise.
This has been unequivocally and repeatedly demonstrated by several research groups and confirmed by"
2/7"major govt. bodies in the US: the National Institutes of Health, the Center for Disease Control and the National Academy of Medicine.” #MECFS #LCME #ExertionIntolerant #EnergyLimitingConditions #PostExertionalMalaise #StopRestPace…
3/7 #pwME "need a level of discipline at least as high as the average Olympic athlete to control and restrict all their activities so completely for years." #MECFSWarriors
#Baseline #FineLine
Read 8 tweets
#pwME and #LongCovid
If you have taken any antivirals or monoclonal antibodies, please fill in this survey:

Options include:
- Tollovid/Gromwell root
- Paxlovid
- Molnupiravir
- Remsdesivir
- Mabs
- Any other antiviral

Data will move us forward!
Note: experiences with no effect/adverse effects are very much welcome!
Read 4 tweets
#pwME #LongCovid
Ik wil met een ergo gaan starten met pacing. Echter vraag ik me af of dit wel echt pacing is zoals het bedoelt is bij #mecfs of dat het niet toch een soort verkapt get is.
Zou iemand me kunnen helpen? Ik merk dat ik het moeilijk inschatten vind #pacing 1/
Hier wat foto’s uit de folder waardoor ik twijfel.

Deze folder was overigens eentje die de gebruiken bij chronische pijn revalidatie, maar een andere over pacing had ze niet.

Hoop dat iemand me kan helpen!! Vooral omdat het woordje ‘Graded’ terug komt twijfel ik
Weten jullie dit misschien?
@JetRoz @AnilvanderZee @hout_marianne @tjalcovrv @SlaapkamerA

Wil graag met begeleiding iets doen en voel me zo gebrainwasht dat ik zelf niet meer weet wat nou helpend is of wat dus een red flag is.
Read 5 tweets
Stop doing standard tests on #LongCovid patients and claim that they are physically alright because the results are normal. Medicine & Science have not bothered to develop proper biomarkers for post viral illnesses for decades, ignoring the pleas from patients, including #pwme.1/
The world has not seen a pandemic on the scale of what #COVID19 caused (last was the Spanish flu) and by definition, you have not seen mass disability on the scale of what #LongCovid has been causing. Use your brains and empathy - if you have either of them - & think! 2/
Why would millions of people sit at home, losing their appetites, mobility, health, livelihood (and lives, sadly, in some cases) after contracting Covid without an actual biological/physical cause? They cannot all be depressed, surely? 3/
Read 9 tweets
🚨Attention medics.🚨 An important thread on #MyalgicEncephalomyelitis Forget what you think you know. It is not psychosomatic. These pts are desperately physically unwell, likely with a chronic infection. #MedTwitter #MedEd #TeamGP 🧵 1/
Bedbound & housebound, they make up #millionsmissing. They maybe out of sight, but they are never far from my mind.

Neglect of #ME is the biggest medical scandal of the 21st century. The medical community will soon look back on their treatment of #pwME with horror & shame./2
But some Drs maybe forgiven for their ignorance. #ME fails to feature on the UK medical curriculum and as such, awareness & understanding is low.

The condition has also been highly stigmatised & erroneously - but deliberately - labelled psychological./3
Read 22 tweets
BIG PROBLEMS with framing of new baseline study of NIH intramural #LongCovid #PASC cohort

lack of abnormalities on ROUTINE tests

no objective abnormalities

It ignores #LongCOVID similarities to #MECFS & advances in research on both, including those funded by NIH!

no evidence found

evidence against


Yes, it's a baseline study. But the pivot to discussions of depression and anxiety when abnormalities weren't easily found is jarring.

This follows the HORRIFYING tendency of medicine to psychologize illness, when physiological abnormalities aren't found.


Read 15 tweets
Ich muss thematisieren, was hier m.E. zu kurz kommt.

Obwohl #MECFS seit über 50 Jahren als eigenständige Krankheit von der WHO anerkannt ist, wird sie NICHT anerkannt.

Was ich damit meine :

Obwohl es sich um eine schwere Erkrankung handelt, die 25% komplett bettlägerig und 60% der Betroffenen arbeitsunfähig macht, erhalten Betroffene keinen Behindertenstatus.

Ausnahme : zusätzliche andere Diagnosen (z.B. psychische, was dazu führt, dass Betroffenen immer
wieder suggeriert wird, sich auf eine psychische Diagnose "einzulassen" (was einige schlussendlich auch tun. Dass das das Bild noch mehr in Richtung "Psyche" verzerrt, brauch ich nicht mehr zu erläutern).

Ohne Behindertenstatus entfallen Betroffenen Hilfemöglichkeiten.

Read 20 tweets
Omicron wave of mass infection showing its impact. Too many friends & colleagues reaching out for advice on #LongCovid. Heartbreaking.

A 🧵on Rest & Pace. Biggest advice: don't repeat the mistake that most of us from the first wave in 2020 did i.e. push yourself.

Data suggest recovery after the first few months is infrequent.

Tran et al (France)*:
-Of LC patients who were still sick at 2 months, only 15% recovered by 1 year

-Of those who thought they were better, 33% subsequently relapsed

Whitaker et al (UK)*:

- A rapid drop-off in symptom reporting by 4 weeks, a further, smaller drop by 12 weeks, but then very limited further decline (for up to ~22 weeks of study duration) for both men and women.

*Non-vaccinated population
3/… Image
Read 21 tweets
Two years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing, grassroots movement of people who weren't recovering from covid. Across the world, we were fighting for recognition and studying our own disease

#LongCovid is now one of most studied diseases in history. It's not "rare" or "mysterious". It was recognized by the WHO in August 2020 already, after an history-making meeting with advocates and patient-researchers. We have come that far.…
And yet, this pandemic is a mass disabling event. Treatment options, open communication, and support for patients are still lagging behind. We will not stop fighting for the rights of people living with #LongCovid and other complex chronic diseases.
Read 28 tweets
What are some things I consider Very Bad that I don't see?
1) The Multiple-Hit Hypothesis

Folks who recovered from #LongCOVID can & will catch SARS-CoV-2 and contract #LongCOVID a second time. And many won't recover this time.

Many #pwME had multiple hits (usually but not necessarily w/o full recovery) before a 'point of no return'.
2) A Deadlier Variant

People assumed Omicron was 'mild' because they observed fewer deaths. As it turns out, it was killing vaccinated ppl less often. It's not less deadly than other variants. There is no reason we will move towards less deadly variants.…
Read 15 tweets

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