Discover and read the best of Twitter Threads about #CFS

Most recents (24)

1/ Der menschenverachtende und einer Hexenjagd ähnelnde Umgang mit Warnern vor Nebenwirkungen der #Covid19-#Impfstoffe (Prof. Harald #Matthes, Charité und Andreas #Schöfbeck, BKK ProVita) durch Medien, Wissenschaftler und Funktionäre war allem Anschein nach weder eine … Image
2/ … Premiere noch einmalig in der Geschichte der Entwicklung und Zulassung von neuen #Impfstoffen.

Den Ausführungen von @PGtzsche1 im Buch „Impfen - Für und Wider“ nach zu urteilen, erhält man vielmehr den Eindruck, dass dieses Vorgehen eine bewährte Strategie von …
3/ … Impfstoff-Herstellern, Zulassungsbehörden, gewissen Medien und vermutlich mit #Interessenskonflikten behafteten Wissenschaftlern u. Ä. darstellt, um Zweifel an der Sicherheit von neuen Vakzinen zu zerstreuen und Warner und Kritiker mundtot zu machen. …
Read 21 tweets
These results are what I was expecting.

I asked the question because that night I started reading the original papers from the 50s & they made me open to the possibility of the answer being no. 1/8
What I read didn't sound like the #MECFS that I know. There're many possible reasons for that. Maybe the disease morphed into something more similar after the original case reports. Maybe issues like PEM were actually there, but they didn't know to look for them. 2/8
Maybe since they originally thought it was poliomyelitis they ended up looking for signs & symptoms that come from that. 3/8
Read 8 tweets
May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by liking and/or retweeting this video. This 2017 TED talk features @jenbrea.

#MyalgicE #MyalgicEncephalomyelitis

Day #1 Image
@jenbrea 2/

May is Myalgic Encephalomyelitis (ME) Awareness Month.
You can help by sharing and/or liking this video. It is 3 minutes 5 seconds long.

This film will give you an introduction to PEM (Post Exertional Malaise).

Once you've understood what PEM is……
@jenbrea 3/
May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by sharing and/or liking this video (9 minutes) This is ME (2020) "A short film exploring 'Spoon Theory' told through the eyes of a young woman struggling with ME/Chronic Fatigue Syndrome"……
Read 20 tweets
May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by liking and/or retweeting this image.

#MyalgicE #MyalgicEncephalomyelitis #Day1 Image
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retweeting and/or liking this image.

Day #2
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome Image
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by re-tweeting and/or liking this image.

Day #3

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis
#ChronicFatigueSyndrome MUSCLE Myalgic Encephalomye...
Read 5 tweets
1/25 When I was a brand new Mum to @JasmineMarwick my Health Visitor told me to remember that I was the expert of my child and that HCP’s were there to guide and help me.

I often think about those words…..
2/25Aug 20 when Jasmine fell unwell & immediately too tired to attend school or walk up a flight of stairs without collapsing no one mentioned or tested for Covid but I knew it wasn’t the blue light on her phone keeping her awake that made her fatigued as suggested by the Doctor
3/25 So we kept going back…….

In Feb 21 when we finally got to see the Paediatrician I didn’t think it was ‘good news’ as they said after they bent her hand back & said that there was nothing neurologically wrong with Jasmine. I wanted answers.
Read 25 tweets
@teaze_r @RedactedMom 1-) hEDS can not be detected w/ a genetic test. My child has an EDS gene in which I am positive that I am the one who passed it down. However they dismissed that gene mutation as a Variation of Unknown Significance, (VUS).
However scientists appear to be way ahead of that...
@teaze_r @RedactedMom 2-) ...geneticist because when I looked it up, having 1 copy of that mutated gene CAN cause problems. The mutation that I am talking about is a mutation in the COL12a1 gene.…
@teaze_r @RedactedMom 3-)... My 1st sign of having this mutation was Clinical Carpal Tunnel Syndrome. My 2nd sign was Plantar Facitus, however at the time that I started having those problems I didn't recognize either problem as being a part of something as a whole. The next sign that I can think...
Read 21 tweets
The establishment creates this problem by first denying the disease, creating a vacuum that quickly fills up with untested treatments & questionable cures. Then they go about trashing their victims who desperately need relief, and the doctors who are willing to treat.
#BTDT #Lyme
It is both infuriating & heart wrenching to watch this scene play out again, with some of the same establishment players engaging in narrative control. Go to ~48:00 for IDSA creep Paul Auwaerter’s word salad tossed at Congress, thx to my friend @PowerOfNeo…
That they have denied, conflated & confused for DECADES #LymeDisease #ME #mecfs #cfs #fibromyalgia and passed them off as psychiatric, and now are doing the same with #LongCovid, should tell you all you need to know about #PublicHealth’s intentions.
Read 4 tweets
Millions are missing
And the cooper’s wife is too
So we hold our silent vigil
For a girl in a gown too blue
Lost in halls and hospitals
A silver talisman bears true
The diagnosis they doubted
With “Maybe it’s just you?”
“Maybe it’s your fault
Did you ever think it might?
It sure looks like anxiety
Caught in fight or flight
This isn’t an emergency
I’ve no time to spare tonight
For another hypochondriac
Who thinks her Google search is right”
The words echo again
We’ve heard them all before
Generations of us girls
Lost to fable and to lore
Seal wives and fae women
Changelings left by the door
You wouldn’t hear our screaming
So now you’ll hear our roar
Read 15 tweets
Tales of covid 💉 injury dominate Twitter but the HPV has caused untold damage to teenagers. Rebecca was 12 when the jab left her bed bound. Doctors' response? Commit her to a mental health facility for 16 months. They said it was 'all in her mind'
After her 2nd jab she needed crutches. Her school attendance dropped from 98% to 60%. After the 3rd, she collapsed and now suffers #cfs and #POTS. Doctors knew it was the HPV but berated her parents for allowing her to have 3 jabs although Rebecca’s school had insisted.
Rebecca’s PoTS means that if she sits up, she will faint after about 10 seconds, but nurses insisted she try. Rebecca said: ‘They were determined I would sit up and blackmailed me. They said if I didn’t get into the chair, they would take away my nice carers.’

Read 10 tweets
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)

2 of 4 authors are MDs


I thought this was very good. Will post extracts.
#MEcfs #CFS #MedEd
1/ Screenshot of abstract

My overview:

Paper has lots of useful points & also helpful overall to show how the NICE guidelines for ME/CFS have changed dramatically in the UK from the 2007 version, with the updated approach being much more sympathetic regarding helping patients.

#MyalgicE #PwME #CFSME

“The new NICE guideline for ME/CFS…recognis[es] the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.”

#mecfs #cfs #neurome #cfsme #myalgice #pwme
Read 26 tweets
ワクチンデマを大量拡散… 謎の女性インフルエンサーは実在しない「AIアイコン」だった。ツイートには多数の不自然な点も…
いつも言っていることですが、こういうデマ拡散アカウントがそれなりに力を持ってしまうのは、ワクチン接種を推奨している先生方が、積極的に #ワクチン長期副反応#ワクチン後遺症)を見ないことにも原因の一端があります。副反応に苦しむ方々が、どこの病院に行ってもバカにされ、嘘つき呼ばわり
されてしまう現状で、こういったアカウントだけを非難するのは、ちょっと都合が良すぎる。勢いづかせてるのは誰ですかという話です。地元の病院で真摯な診察が受けられ、今できる治療(#ME/#CFS 様の症状なら を見れば分かります)を試してもらえるなら、そんなこと起きない。
Read 4 tweets
Danke @FAZ_NET
@Not_Recovered #NotRecovered

Genesen – aber nicht geheilt„Deshalb ist es wichtig, einen Unterschied zu machen – sagt Judith Bellmann-Strobl, Leiterin der Post- Covid-Sprechstunde an der Berliner Charité und Neuroimmunologin.

🧵 1/6…
Einige starten schon durch, wenn sie sich nur halbwegs fit fühlen. „Doch bei fortgesetzten Beschwerden kann das eine Abwärtsspirale in Gang setzen“, es drohen Entzündungsabläufe, bis hin zu Gefäß- und Organschäden. Auch die Müdigkeit spitzt sich bei manchem zu, zum #CFS

Pacing‘ nennen Fachleute dabei das nötige Schritthalten mit den eigenen Kräften und entlang der Belastungsgrenze. „Das heißt vor allem, den Kontakt zu sich selbst herzustellen und so zu einem besseren Energiemanagement zu kommen“, sagt @FrommholdJordis

Read 6 tweets
12-page report on "International Conference
ME/#CFS & #LongCOVID – Treatment & Rehabilitation"…

Conference website:…

I found the report good though I'd be surprised if some annoying stuff hadn't been said by someone


"[As well as post-exertional malaise] other common symptoms of #LongCOVID & ME/#CFS include fatigue, cognitive difficulties, dysautonomia, reduced tolerance to physical +/or cognitive exertion, brain fog, unrefreshing sleep, pain & immune system symptoms"

#MEcfs #PostCovid

"The presence of orthostatic intolerance and post-exertional malaise/ post-exertional symptom exacerbation (#PEM/#PESE) requires interventions to be modified in view of these diagnoses for rehabilitation to be safe"
Read 7 tweets
“What Is #LongCOVID—and How Are We Going to Solve It? This potentially life-altering post-viral syndrome may have affected as many as 23 million Americans (and counting)”

Contains quite a bit of discussion about #MEcfs…


1/ Image

“We’re starting to gain more understanding of what’s driving #longCOVID & who is most at risk, & the more we understand, the more it will help us get a grip on similar chronic illnesses, like #MECFS, that have been largely ignored for far too long” - @VirusesImmunity

“In those who felt ill from #postCOVID19 syndrome for at least six months, the most common symptoms were fatigue, cognitive dysfunction, & post-exertional malaise (a triad that besets many people with #MECFS), according to the study” of 3762 patients by @patientled

Read 12 tweets
in this way inhibits the entry of the virus into host cells
So in addition to using it as a Fibrinolytic, Anticoagulant,Antiplatelet
is added this effect against Viral Load of #Nattokinase…
#LongCovid #CFS Image
There are several other studies of the use of NATTOKINASE
In the link is a study that included 153patients with deep vein thrombosis,phlebitis or venous insufficiency
Conclude that NK represents an efficient/safe treatment in patien. with vascular diseases…
In this study
they point out that Nattokinase was superior in safety to t-PA, which is a traditional thrombolytic for IV use
A lower risk of bleeding was observed with the use of NK
And they conclude that NK is an excellent antithrombotic and with low risk…
Read 3 tweets
1) An interesting study, but an important limitation is the lack of data for post-exertional malaise and brain fog. The authors use the fact that these symptoms were not yet seen as related to Covid-19 at the beginning of the pandemic, and that this only became apparent at
2) a later stage, as an excuse that these symptoms were not included.

I thought this was an a bit of an odd statement. Both Tim Olde Hartman d Judith Rosmalen were members of the Dutch Health Council for "#MECFS" for 2 years, which was published in 2018. Post-exertional malaise
3) was added as a mandatory symptom for the diagnosis. Cognitive dysfunction as optional. For the ME Ramsay criteria, PEM has been a mandatory symptom since the '50s.

In addition, we know that in previous coronavirus outbreaks, people met the "CFS" criteria or had symptoms
Read 10 tweets
Some extracts from “The politics underpinning the neglect of people with ME/#CFS” which summarises her paper “Towards a critical psychology of #chronicfatiguesyndrome: #biopsychosocial narratives & UK welfare reform” by @JoElizaHunt…

#MEcfs #PwME

“The [#biopsychosocial] model has been used as psychosocial model, to re-frame chronic health conditions (particularly those surrounded by medical controversy or uncertainty) into psychosocial entities, allegedly amenable to psychosocial healthcare interventions (contd)”

“(Contd) and thus to ‘recovery’ and re-entry into the labour market. Such health conditions could thus be largely exempted from welfare provision, private disability insurance protection & on-going biomedical care, reducing state expenditure in these areas (contd)”
#MEcfs #CFS
Read 17 tweets
Press release for New Zealand paper:

“New research provides insight into Long COVID and ME: Researchers have uncovered how post-viral fatigue syndromes, including #LongCOVID, become life-changing diseases & why patients suffer frequent relapses”

#MEcfs #CFS #PwME #PwLC


“Arising commonly from a viral infection, #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS), is known to cause brain-centered symptoms of neuroinflammation, loss of homeostasis, brain
fog, lack of refreshing sleep, & poor response to even small stresses”


#LongCOVID has similar effects on people and is believed to also be
caused by neuroinflammation.

Lead author Emeritus Professor Warren Tate, of the University of Otago's Department of Biochemistry, says how these debilitating brain effects develop is poorly understood”
Read 14 tweets
“Scottish Government backs NICE guideline”…

“In December 2021, the Scottish Government commissioned Blake Stevenson Ltd to engage with stakeholders…to gather
their views on the NICE guideline on #ME/#CFS

#MEcfs #PwME #ChronicFatigueSyndrome


“For this independent stakeholder review, a total of 37 stakeholders contributed. This consisted of 14 clinicians, 10 third sector #ME/#CFS organisations/academics & 13 people with lived experience of #MECFS,

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME

“and a further 93 people responded following an online survey [on the 2021 NICE #MECFS guidelines] that was
distributed to a wider stakeholder group. The response from the majority
of stakeholders was overwhelmingly positive”

#NeuroME #CFSME #MyalgicEncephalomyelitis
Read 5 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
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
I have been stuck in bed and within one room for almost 15 years now. I have learned over time to let go ( as many of us have) in the most impossible and profound of ways. To watch life pass by, to observe…. #cfs #mecfs #pmwe #longcovid #lymedisease #lyme
the rest of the world move forward, while sitting from the sidelines, from behind the metaphorical glass window pane. Friends going to college, discovering themselves, starting careers, traveling, buying homes, getting married, having babies,
starting families.
All things that I have craved with my whole heart to also be able to do but the severity of my condition has simply not allowed it. Having severe M.E. and also late stage Lyme disease is a prison sentence for many, an unexplainable and ..
Read 10 tweets

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