Discover and read the best of Twitter Threads about #cfs

Most recents (24)

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
ARTE Film „Die rätselhafte Krankheit“
#Magdeburg #Diskussion #MEcfs

„Ich fände das sehr wichtig, dass das Thema #ME/CFS quasi zur Chefsache wird und dass sich der Bundesgesundheitsminister (das sind Sie @Karl_Lauterbach) dem mal ordentlich annimmt, das prioritär auf den…
1/x Image
Tisch packt und die Forschung mit Geschwindigkeit voran treibt, dass wir Wissen bekommen können, aber auch Medikamente und Behandlungsmethoden(!), die wirklich helfen und nicht den Zustand verschlimmern.“

Danke, Nicole @NicoleAngerMD für deinen Einsatz.
Mit den beiden Soziologen, hätte ich gern noch ein Wort geredet (eher ein Hühnchen gerupft) – aber keine Kraft, das anzuleiern. Ich glaube, die Soziologen haben weder Film, Filmdiskussion noch Ausführungen von Daniela und Anahita verstanden, oder die starken Darlegungen
Read 10 tweets
#1 I am a very private person who dislikes social media, but I have finally decided to use my voice to raise awareness of long covid and other post infectious diseases that don’t get enough attention. Here’s my story. #ZiekBOOS I got infected with #covid19 in june 2022.
#2 It started like a bad flu, I wasn’t hospitalized. 2 weeks later I woke up with extreme fatigue, headache, dizziness, heavy legs and pressure against my chest. I was barely able to walk for 5 min. Then I lost my sense of smell&taste. I understood that I might have long covid.
#3 3 weeks after my infection I consulted a GP. The GP sent me home with the message that there’s nothing they could do and advised me to take vitamin C supplements. I just had to wait it out for a couple of ‘months or years’.
Read 20 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
1) How I cured my #LongCovid in 3mos after suffering for almost a year. This was my last hope. I researched what #Covid does to the body, came up with a list of "clinically studied" supplements and...
2) took them all. Firstly, I am not a MD. In March 2021 I caught Covid while working as a #frontline #healthcare worker. My symptoms of #brainfog, #fatigue, #jointpain, #muscleweakness, morning #stiffness happened after my recovery. At the time, this #postcovid #syndrome was...
3) was just starting to be discussed online. The the term #Longhauler was coined. Those in the #ME, #CFS, #Lyme #MCAS #community starting speaking out about the similarity of #symptoms with #LC. #Covidclinics started to sprout up, include one at the....
Read 48 tweets
Next is Dr. @aucott_john on Lyme disease and infection associated chronic illness. Lessons from COVID Long Haulers and ME/CFS.
Infection associated illness is not new. #LymeDiseaseAwarenessMonth
Dr @aucott_john quickly noticed the symptoms of #LongCOVID were very similar to #LongLyme. Can occur in patients with mild illnesss. Something similar in how these diseases are affecting humans (P.S. Long-haul does not occur post-flu.) #LymeDiseaseAwarenessMonth
Patients with chronic illnesses are often disbelieved. It is difficult as there are no diagnostic tests to prove "Long haul" is real.
Read 16 tweets
Dr. Steven Harris discussing how to evaluate complex #LymeDisease cases.
Steven's father Nick Harris, who recently passed away, was the founder of @igenexlab and founding member @ilads_lyme… #LymeDiseaseAwarenessMonth
#LymeDisease makes all other diseases more complex (eg Lyme + Babesia is worse than Lyme alone) and other conditions make Lyme harder to treat (eg. Bartonella &/or MCAS) #LymeDiseaseAwarenessMonth
#LymeDisease treatment needs to take into consideration the length of time of the infection(s) and all forms pathogens & toxins, including mold.
Read 4 tweets
Next speaker
Peter Rowe, MD: Lessons from ME/CFS that can inform Lyme disease as well as Long COVID
Professor of Pediatrics @HopkinsMedicine
#LymeDiseaseAwarenessMonth Image
Peter Rowe, MD
Postural Orthostatic Intolerance #POTS is very common in ME/CFS.
#LymeDiseaseAwarenessMonth ImageImage
Peter Rowe, MD
Common forms of orthostatic intolerance. Frequently the heart rate will be above 120 BPM. #POTS #NMH
#LymeDiseaseAwarenessMonth Image
Read 14 tweets
“ME/CFS: What Psychiatrists & Psychologists need to know” by @DoctorsWithME (March 2022)…

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #NeuroME #MEcfs #CFS #PwME #CFSME

#ME/#CFS is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children, and all social classes. About 75% of sufferers are female”

#MyalgicEncephalomyelitis #MEcfs #PwME #CFSME #ChronicFatigueSyndrome
ME/CFS “has a worse quality of life score than many other serious illnesses including cancer, stroke, rheumatoid arthritis and MS. 25% of patients are housebound or bedbound.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #SevereME
Read 10 tweets
True Cause of Chronic Fatigue Syndrome (#CFS) / #ME

CFS—or whichever name for it speaks to you—is neurological fatigue from an ongoing and chronic Stage Four Epstein-Barr virus (EBV) infection.
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Any of the over 60 varieties of Epstein-Barr virus, accompanied by toxic heavy metals such as mercury and aluminum, create viral neurotoxins that inflame and drain the central nervous system, creating an exhaustion that’s far more pronounced and limiting than simply being tired.
In its more aggressive forms, the neurotoxins cause a mild encephalitis (which is undetectable by MRI or CT scan), which creates even heavier fatigue.
Read 4 tweets
#ME/#CFS#PS について「こんな感じ」というのって、ちょっと勇気がいるんですよね。日本のそうそうたる先生方が、苦労してコンセンサスを形成してつくられたスケールだと思うし、長年疾患と付き合ってきた患者さんからすると「その解釈は違う」と感じられることも多そうで。
けど、だからといって黙っていれば、今、まさに症状が進行中の #コロナ後遺症 の患者さんたちの不利益に
Read 34 tweets
Two years ago today that I contracted a mild case of #CV19, before vaccines, before masks, before lockdowns. My life has been turned upside since by #longcovid with waves of frightening, debilitating symptoms, desperation and deterioration in mental and physical health 1/12
From March 9th 2020 my health went downhill - constant crushing chest compression and pain, a constant feeling of suffocation (covid strangle), joint and muscle pain, fever, dizziness, cognitive impairment, ruinous insomnia, terrible gastro-intestinal issues (nausea, reflux) 2/12
The worst being the claustrophobic chest compression (like an anvil on my chest) and inability to breathe properly, or get a proper lungful of air for every second of every day, 24/7, for close to a year. Fuck me I will never forget how that felt. It’s traumatising. 3/12
Read 12 tweets
There is NOTHING psychosomatic about the cause of #MyalgicEncephalomyelitis. It is nothing more than a myth perpetuated by those morally bankrupt. A myth which needs putting to bed. #MedTwitter #MedEd
#me #CFS is not taught in UK medical schools. This needs to change. ME/CFS in its severest forms can be life-threatening and in all cases, prevents one from leading a normal life.
The body is oxygen starved and consequently there is an issue with aerobic respiration. Abnormally high levels of latic acid have been found on brain imaging
Read 6 tweets

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