Discover and read the best of Twitter Threads about #mecfs

Most recents (24)

A thread for #MECFS, & related, research papers from w/c 11th October.

Links will be to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Please note that inclusion in this list does not equal recommendation.

"Potential Implications of Mammalian Transient Receptor Potential Melastatin 7 in the Pathophysiology of ME/CFS" by Du Preez, Staines et al…

"Improvement Effects of Myelophil on Symptoms of Chronic Fatigue Syndrome in a Reserpine-Induced Mouse Model" by Song et al…

Read 5 tweets
1/🧵 Billing for #LongCOVID💰

It Matters!

What does it mean that docs can now bill using ICD-10 code U09.9 “Post COVID-19 condition, unspecified”effective October 1, 2021?

Let me explain a tad bit why this is so key.
2/ I fully believe in #LongCOVID, and patients must be validated as the experts of their own narrative. BUT, absence of a billing code sent a terrible message to clinicians & pts.

This legitimizes the #PublicHealth catastrophe & facilitates pts being HEARD & SEEN 👁.
3/ Docs “believe” better when they can charge for testing & get pts covered, too. This also allows databases to track & analyze epidemiology of #LongCOVID. That means research can be carried out to answer questions, improve care & prepare for future pandemics. Read an anecdote👇
Read 7 tweets
The 🇪🇺 petition has made a difference on #MECFS. Now is the time to call on 🇩🇪 to act! For this we have submitted a petition: #SIGNforMECFS.

Since by law almost everyone may sign in, #pwME worldwide can now make their voices heard by German Bundestag.
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Most importantly, you can sign our #MECFS petition online from anywhere! Only hurdle: a website in German.

Here we explaine the simple procedure in such detail that this problem can be overcome.

Please support #SIGNforMECFS. You can make a difference!
The signing period for our petition lasts 4 weaks. Deadline is November 9th 2021.

Please support #SIGNforMECFS. You can make a difference!
Read 4 tweets
ℹ️ Jetzt zählt JEDE Stimme für Schwerstkranke!

Die #SIGNforMECFS-Petition (ID 122600) kann ab sofort bis 09.11.2021 über das Portal des Deutschen Bundestages unterstützt werden.

Wir fordern: Versorgung, Forschung, politische Unterstützung für #MECFS!
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Direktlink zur #MECFS-Petition auf dem Portal des Deutschen Bundestages:

Ausführliche Anleitung zur Online-Mitzeichnung auf unserer Webseite:

Alle weiteren Informationen zu #SIGNforMECFS hier:
Und wer sich jetzt fragt, was #MECFS eigentlich ist und weshalb wir medizinische Versorgung für Schwerstkranke fordern, die doch selbstverständlich sein sollte, dem sei z.B. dieses kurze Interview mit Dr. med. Josef Lösch empfohlen!
Read 4 tweets
A thread for #MECFS, & related, research papers from w/c 4th October.

Links will be to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Please note that inclusion in this list does not equal recommendation.

"Neurochemical abnormalities in chronic fatigue syndrome: a pilot magnetic resonance spectroscopy study at 7 Tesla" by Godlewska et al.…

PHD Thesis: "Personal Informatics Systems and the Integration of Data from Novel Sensor Technologies" by Cillian Dudley…

Read 4 tweets
A thread for #MECFS, & related, research papers from w/c 27th September.

Links will be to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Please note that inclusion in this list does not equal recommendation.

Preprint: "Molecular evidence of autophagy impairment as serum level of ATG13 is elevated in patients with ME and CFS" by Roy et al…

"ME/CFS: A Neurological Entity?" by Gandasegui et al…

Read 6 tweets
Is the absence of evidence also evidence of absence? Proponents of a biopsychosocial view of #MECFS often appeal to such a principle rather than present evidence for a psychopathology. ->
Absence of evidence is not sufficient to prove a negative proposition. It depends on whether proper research has been carried out and whether the effect could be established with available tools. If not, to argue using absence of evidence is an argument of ignorance—a fallacy. ->
The burden of proof is always on the one who makes a claim. That means that if someone appeals to the absence of evidence, he/she must also show that proper research has been carried out AND that it is expected that the effect could be demonstrated with available tools. ->
Read 5 tweets
Meine aktuelle Sichtweise zu #LongCOVID

Berichte zu Häufigkeiten von LongCovid verlieren an Interesse. Allzu oft sind symptombasierte Studien Grundlage der Berichterstattung. Bei einer so wenig objektivierbaren und diffusen Symptomatik wie wir sie unter Long/Post-COVID finden1/9
2/9wird die Abgrenzung zu Allgemeinsymptomen immer schwierig bleiben und anzuzweifeln sein. Andererseits mehrt sich das Wissen um organische Schäden und Folgen. Vieles davon bleibt außerhalb von wissenschaftlichen Ansätzen unentdeckt, weil es zunächst keine Beschwerden verursacht
3/9 Wir gehen aktuell von 500-600.000 Betroffenen in D aus. Ca. 80 % der nach 5 Monaten Betroffenen haben unveränderte Einschränkungen nach 12 Monaten. Mindestens 50 % sind eingeschränkt arbeitsfähig. Ein Viertel arbeitsunfähig. Ein Großteil geht trotz Beschwerdezunahme arbeiten.
Read 9 tweets
@me_awareness @postersandme @AliceOutThere @TimC_syd @AtypicalPolioME @hellogeniegroup @tweetingmole BPS model places increased accountability on patients 4 their rehab & return 2 work . Including that sick role is temporary & that cognitions ,behaviours & social factors interact with physiology & perpetuate disability & reliance on benefits & can B managed 2 restore function
@me_awareness @postersandme @AliceOutThere @TimC_syd @AtypicalPolioME @hellogeniegroup @tweetingmole That patients/ disabled are to cooperate with rehab and psych social factors are obstacles to expected recovery . This is why if don’t recover 6 months or obstacle to approach referred social services , deteriorate more intensive behavioural rehab IAPT & inpatient units .
@me_awareness @postersandme @AliceOutThere @TimC_syd @AtypicalPolioME @hellogeniegroup @tweetingmole MUS pathway refer 2 secondary psych if patient can’t come 2 compromise with GP over BPS explanation 4 their symptoms.Back 2 GP when agree 2 deal with symptoms Mental capacity questioned if don’t cooperate.GP can diagnosis MUS any area they feel it affecting management
Read 12 tweets
I'm taking on the @MayoClinic's cruel & harmful practice of prescribing exercise & CBT to #LongCovid patients & #pwME that experience post exertional malaise (PEM).

I'll work to add to this 🧵 over the weekend, but would love some help. #MECFS #FBLC @dianaberrent @MEActNet
Long thread that helps explain why I'm so upset & what happened

The @MayoClinic published this one themselves 🥴

"...treatments, such as cognitive-behavioral therapy (CBT) and graded exercise therapy (GET), that could worsen their condition."…
Read 11 tweets
At an @MEActNet press briefing back in March, Dr. Anthony Komaroff confirmed his earlier prediction that we had reason to expect some w/ COVID-19 would develop a debilitating chronic #LongCOVID syndrome with symptoms similar to post-viral #MECFS.…

🧵 "It is not surprising that some [with COVID-19] develop
Dr. Komaroff suggested that the underlying pathology of #LongCOVID may be similar to problems that have been observed in #MECFS.

Long COVID researchers can refer to ME/CFS research across the past few decades for a substantial head start. "It’s my bet that Long Covid is going to prove to be
ME/CFS: a final common pathway that can be triggered by different things?

#LongCOVID #MECFS "ME/CFS, my guess, is an illness with a final common pa
Read 10 tweets
Now we get to another area of particular interest for me: circadian rhythms and #fatigue. Elizabeth Klerman presenting. (1/5) #sleep
How does sleep/circadian rhythms affect various body systems and ultimate effects?
First I've heard of health disparities, here; well done, Klerman. #fatigue #sleep
Circadian rhythms WILL affect results in studies. Researchers, take note!
Record time of events, blood draws, etc.!
Include sleep metrics in subjects!
Circadian =/ diurnal.
Most studies that say they're talking about circadian rhythms are actually referencing diurnal rhythms.
Read 6 tweets
VERY EXCITING! Drs. Liisa Selin & Anna Gil, of the Univ. of Massachusetts Medical school, now have a fundraising webpage. Please folks, support this two-woman research lab investigating #MEcfs, #LongCovid, EBV & more. Details on their "Classy" webpage. -…
The Selin Lab, a two-woman lab, gets a lot done! Read all about it on their "Classy" webpage. Top immunologists and ME/CFS researchers have told me they think the Selin Lab is on to something big.…
"We are driven to conduct research that will translate into tangible help, perhaps even a biomarker &treatments. There are already millions in the US w/ ME/CFS. Millions more will soon be presenting w/Long COVID. We will be happy if our work offers them concrete help."--Dr. Selin
Read 11 tweets
ooooh, I am very interested in this! Pierre Magistretti is discussing the astrocyte-neuron lactate shuttle. I had a long conversation with someone who wrote a review paper on this one. (1/6) #fatigue #neurology
Lactate is required for energy for the brain. BUT -- it is not only this but also a signalling molecule for neuroplasticity & neuroprotection. (This idea of lactate being 'neuroprotective' is of particular interest to me.) (2/6) #fatigue #neurology
Magistretti is going at warp speed on this one, and I would have no idea what he was talking about if I hadn't already familiarized myself with the astrocyte-neuron lactate shuttle. However, he is clearly unfamiliar with #MECFS. (3/6) #fatigue #neurology
Read 7 tweets
Now we're up to Ron Davis and the metabolic trap hypothesis for #MECFS: yeast model for the metabolic trap. (1/7) #metabolism #fatigue
Tryptophan is largely metabolized by a protein made by an enzyme called IDO-1. A second enzyme, called IDO-2, may be a "more primitive" version of the same enzyme. IDO-1 is substrate-inhibited. (2/7) #metabolism #MECFS
In a small study with ~20 severe patients, all had at least one mutation in IDO-2. "It's not a requirement that you have a mutation in IDO-2" to have ME/CFS, says Davis. It doesn't rule out that mutations here can play a role. (3/7) #metabolism #MECFS
Read 9 tweets
Mark Davis now. He's talking about celiac (severe gluten intolerance/sensitivity). He found that gluten-specific CD4+ T cells were directly associated with the response. (1/6) #fatigue #celiac #autoimmunity
Interestingly, they're mentioning elevated KIR+ CD8+ cells in autoimmunity. KIR is typically thought of as a marker for NKCs, & associated with their maturation (me saying this, not M Davis). Intriguing, then, that KIR+ CD8+ cells are associated w/autoimmunity... (2/6) #fatigue
...when decreased function of NKCs is associated with ME/CFS. Moreover, perforin (a compound created by NKCs and often a way of measuring their functionality) (3/6) #MECFS #immunology #fatigue
Read 11 tweets
Ian Lipkin, now: Lipkin is summarizing a number of different efforts associated with his research group. He is the first person at this conference that has mentioned how previous coronaviral outbreaks (SARS/MERS) have led to ME/CFS-like syndromes. (1/7) #LongCOVID #MEcfs #GWI
Talking about work at Centers, with shout-outs to each center as well as the nonprofits that have been involved, including our own @MEActNet. (Looking forward to sharing stuff re: this project soon!) (2/7) #MEcfs @Columbia_CII
Overall aims for the Collaborative Research Centers, funded by @NIH. (3/7) #fatigue #MEcfs
Read 8 tweets
Hanson thread.
Starts with: "well, I have no conflicts of interest to declare but I am sure I do think differently from some of those @NIH " #fatigue (1/8)
Preach, @DrMaureenHanson
Mentions low blood volume in ME/CFS.
"The fatigue in ME/CFS is not the result of lack of motivation". Many are willing to tolerate pain and fatigue in order to do something important. In fact, we have repeatedly needed to counsel patients not to overdo. #fatigue #MEcfs (2/8)
Abnormal NKC function is one of our most repeatable findings. (3/8) #pwME #MECFS
Read 9 tweets…

Just the title of this article says it all really

Making it all about Dr Fitzpatrick and detracting from the real issue whilst affecting opinion with sensational wording

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
>“250,000 people in Britain are estimated to have chronic fatigue”

That is for the SYNDROME (has hallmark symptom of PEM)

The SYMPTOM chronic fatigue (accompanying many illnesses) is different

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
“chronic fatigue, characterised by extreme tiredness and generally feeling unwell”

Gross understatement for cfSYNDROME

This chronic, fluctuating neurological condition affects many body systems

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Read 25 tweets
A thread for #MECFS, & related, research papers and presentations from w/c 20th Sept.

Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Please note that inclusion in this list does not equal recommendation.

"Cerebral blood flow remains reduced after tilt testing in ME/CFS patients" by Van Campen, Rowe, Visser…

"ME/CFS Dependence on Social Institutions: Violence, Abuse, Neglect and Exploitation" by Geoffrey Hallmann…

Read 10 tweets
Today we want to thank all the organizations in the #LongCovid, Covid-19, and disability justice space that we have worked with. We are grateful for the solidarity that exists in this movement + encourage our followers to show the groups listed below some support! 1/25
first up, @patientled: born from our support group, this patient-led, diverse, all-female leadership team was the first to study #LongCovid, with their work recognized by @NIHDirector. All the researchers are people with Long Covid and they emphasize patient privacy. 2/25
next, @MarkedByCovid: as leaders in the grief space, this org provides resources to those who have lost loved ones to Covid-19 and trains their members as advocates. Founded by @kdurquiza, this org centers and is led by those most impacted. 3/25
Read 25 tweets
If there is media about ME 'militants' 'wars' (@Telegraph) then we can maybe assume the psychiatrists are worried about @NICEComms Guidelines.
It was a coordinated PR strategy used c.20yrs ago via the Science Media Centre when they threw a media pity party for themselves.
Let's look at Dr Michael Fitzpatrick:
-Part of the RCP network
-Connected to many of the orgs the group has set up:Sense about Science; Science Media Centre; Spiked; Institute of Ideas. Most funded by major biotech & pharmaceutical companies
Fitzpatrick cont
-Member of the Revolutionary Communist Party for most of his adult life (which wanted to turn the UK into a Trotskyist state) (whose the militant?)
-Writer for Living Marxism
- Holds & advocates the view that ME is a psychiatric
Read 4 tweets
The Lion & The Donkey (fable) is a good lesson in general though it does not translate to issues where donkeys are in power, in which case it’s dangerous to ignore them 1…

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk Image
In the NICE debacle:

Lion = NICE

Donkey = opposition to new guidelines (small but powerful groups)

Tiger = supporters of new guidelines

Grass = GET: Green = harmful, blue = helpful


#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
In the NICE debacle donkeys have had influence over the media and therefore the public for years:…


#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Read 5 tweets

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