Discover and read the best of Twitter Threads about #CFS

Most recents (24)

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 lymedisease.org/nick-harris-ig… #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)

doctorswith.me/me-cfs-what-ps…

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

1/
2/
#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
3/
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.
🧵👇 [1/4]
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
#onpoli #ottnews #2022Ontario #Elxn 🗳️ Info Dump 💭📝

City of Ottawa council on April 11 learned about an irregularity RE: a $558,000 pmt from the City to a partner agency, as disclosed by a memo from chief financial officer Wendy Stephanson (partner info withheld). Now...
Now we know the city was in fact bilked out of half a million dollars by illegal fraud and investigations have been initiated by the City's bank, Ottawa police and auditor general Nathalie Gougeon.
It's not the 1st time the city lost a large chunk of money to fraudsters.
In 2019, approx. $130,000 was fleeced from the city coffers after treasurer, Marian Simulik, fell victim to a scam email masked under the guise of official directives from then city manager Steve Kanellakos. Unfortunately...
Read 29 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。
つまり、「PS●の人はこんな感じ。そういう人はこのくらいの活動量が目安です」というのって、偉い先生方からも患者さんからも怒られてしまう可能性がかなりあって、難しいなぁ、と思うんです。
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
なってしまいかねないなぁとも思うわけです。
ということで、あくまで「3800人くらい診てきた時点での平畑が考える、#コロナ後遺症#ワクチン長期副反応)の人ではこういう風に考えるといいんじゃないかな」目安として、思いつくままに書いてみます
「それは違う!」と思う方もいらっしゃると思います
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
Great question; thanks for asking. The main reason people with medically unexplained physical symptoms (MUPS) are resistant to psychological therapy is because, they have been victims of relentless medical gaslighting./1 🧵
In absence of obvious biomarker & return of normal test results, patients with MUPS are often incorrectly ascribed a psychological diagnosis. Psychologisation of MUPS has become commonplace, and it is not acceptable. It is important to consider:/2
(A) The absence of obvious biomarker does not mean one does not exist. Simply, it has not yet been identified./3
Read 14 tweets
#Medium #Mediumship, was reading an old #Tufts@TuftsDaily⁩ article from 2008 interviewing ⁦@jessicaalba⁩ about her film #TheEye, watched the trailer:
you do see how see people died, though, if contacted by the deceased, they share their personality, images of what is relevant, what they think is, which can be difficult; I take #antidepressants, and, am #healing myself from illness, some #trauma, too, and, was seeing more,
earlier in my healing, and believe it is crucial to have a filter/level of #health with, a pretty well-known #medium told me he also got very sick with #pnemonia, I had #mycoplasmapnemonae, in #MeCFS #CFS, had #Lyme #LymeDisease, too, and, the information is for #healing,
Read 39 tweets
@IchBin_RO Bei meiner Frau: Infektion letzen Winter. Als #Immunsupprimierte war zwar recht blander Verlauf, aber 6 Wochen positiv mit lange hoher Virenlast. Auch 2x Moderna + BNT Booster und danach zum ersten Mal überhaupt (=seit einem Jahr) hat #Fatique und #braifog dtl nachgelassen

1/x
@IchBin_RO von beiden Impfungen mit Moderna hat sie in Bezug auf #LongCovid profitiert, aber erst die #dritte #Impfung hat es rausgerisssen. Erste #Anekdoten zu #Symptomlinderung durch Impfung gab es ja schon 02/2021 und @VirusesImmunity hat auch sofort darauf hingewiesen, daß ihre

2/x
@IchBin_RO @VirusesImmunity Theorie damals, daß #LongCovid #Symptome durch verschiedene Mechanismen: #Autoimmunantikörper, "viral ghost" / inaktive Viruspartikel die Inflammation triggern, und #Viruspersistenz [#Lebendvirus in #Reservoirs im #Körper immer noch präsent] ausgelöst werden, #Impfung

3/x
Read 13 tweets
This thread =about #ME charities position on the need for more research & funding. I had a “problematic” discussion with the MEA on this last week, not just bec we disagreed! but their position “seems” afaiu at odds with what many in #pwME want/need or are they right? #mecfs
2) An Meruk report a few yrs ago seemed to agree with MPs calling for action as lack of progress, suffering & economic cost was unacceptable meresearch.org.uk/commons-debate…

They said the ministers response to calls in HoC debate for more research “was disappointing in the extreme“
3)Stephen brine then minister said “As set out in previous debates, the Government invest £1.7 billion a year in health research via the National Institute for Health Research &the MRC through UK Research a&Innovation. Together, the NIHR&MRC welcome high-quality applications for”
Read 18 tweets
I’d like to take this opportunity while #ME #CFS is in all major news outlets today, to recognise the role our media have In peddling false narratives of ‘tired’ people... @BBCNews @Telegraph @guardian @thetimes chose to run these images 👇🏼

I’ve replaced with a little realism
This is @DafoeWhitney bed bound with #ME for years, and like myself, only leaves his room to attend hospital appointments via stretcher.
omf.ngo/a-powerful-mes…
This is Merryn Crofts. Merryn died at age 21, after years of neglect and frustration from disbelief within the medical profession. Cause of death: Severe #ME
inews.co.uk/news/real-life…
Read 5 tweets
大変お世話になっている #筋痛性脳脊髄炎/#慢性疲労症候群 の専門の先生に、#ME/#CFS の診断について伺いました。
ME/CFSの診断基準のゴールデンスタンダードはカナダ基準とされていますが、その他にもいくつもあり、日本では研究班による診断基準試案 fuksi-kagk-u.ac.jp/guide/efforts/… があるのみです。
さらに、実際にME/CFSの専門外来を受診された #コロナ後遺症 患者さんたちのお話や、従来のME/CFS患者さんたちの話を伺うと、私が信頼している先生方も必ずしも診断基準通りに診断されていない様子。そのような混乱した状態にあるのに、ポッと出の私のようなものが診断を乱発していいはずがないという
思いがあります。今まで2800人以上の #コロナ後遺症 の患者さんたちを診察させていただいていますが、当然ながら「コロナ後遺症=ME/CFS」ではありません。「コロナ後遺症の一部がME/CFSに移行する」というのが正しい理解と思います。
ME/CFSは「症候群」ですから、本来は様々なサブグループに
Read 6 tweets
[Thread]
"#MyalgicEncephalomyelitis/#ChronicFatigueSyndrome: Essentials of Diagnosis & Management" (from US ME/#CFS Clinician Coalition)

mayoclinicproceedings.org/article/S0025-…

"21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by #MECFS"

1/
2/
"the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/#CFS

#ChronicFatigueSyndrome #MEcfs #MyalgicE #PwME #MyE #MEeps
3/
"There are many steps that clinicians can take to improve the health, function, & quality of life of those with ME/#CFS, including those in whom #MECFS develops after COVID-19"

#PostViralFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #Covidlonghaulers #PostCovidSyndrome
Read 59 tweets
1) This is Ethan, now aged 15, and ill for 18 months. He would like to be listened to and believed. He is certain that he is not anxious and that he definitely does not have "anything to gain" from debilitating daily symptoms.

#AlwaysOurBabies #LongCovidKids #BacktoSchool2021 Image
2) Anna caught #covid in April 2020, 4 weeks later she had a terrifying "inflammatory response" & was so ill. The hospital refused to see her. She has #covid triggered #CFS & #PANS & been ill since. She's not the same happy, energetic little girl she was. 💔 #AlwaysOurBabies Image
3) This is Evie Mae, it doesn't seem two minutes ago that she was this little.
Now she's 13 and towers above me. Evie says she's tired of being tired.
Evie Mae has crippling #longcovid.
#longcovid #BacktoSchool2021
#longcovidkids #AlwaysOurBabies Image
Read 15 tweets
1/ @Karl_Lauterbach hat heute 2 Tweets mit Arbeiten zum Thema #LongCovid veröffentlicht, diesen:
@Karl_Lauterbach 2/ und diesen: . Beide Tweets legen nahe, dass eine Gefäß- und Gerinnungsstörung mit Entwicklung von oxidativem Stress Ursache von #LongCovid sein könnte. In beiden Tweets wird eine „unklare Prognose“, nach Infekt,bzw. die Gefährlichkeit von #COVID19 betont
@Karl_Lauterbach 3/ Doch was steht in den Studien wirklich drin? Ich habe es mal im Kapitel Pathogenese von #LongCovid unter dem Oberbegriff „Endothelopathie“ zusammengefasst: brainpainblog.org/2021/07/29/ide…. Für alle hier in a nutshell: Die erste Arbeit ist eine hämatologische Arbeit mit 50 Probanden…
Read 11 tweets
Different groups have FOIAed this #Lyme crooks email over the years. On the surface it is appalling, but what does it really mean? “This battle cannot be won on a scientific front...we need reinforcements from outside our field.”

In short, it means they’re guilty. Of what? 🧵
They rigged the #LymeDisease case definition to conform to diagnostics that were designed to detect a small minority of cases that are genetically predisposed to produce a strong antibody response.
Allen Steere had done a ton of research on the association of various HLAs with different antibody responses in #LymeDisease. Everyone knew by the early 1990s that the people with an arthritic knee had a strong immune response but weren’t very sick.
Read 21 tweets
1. It should not be that people end up traumatised by visiting Drs; that they put off going because of how they’ve been disbelieved, dismissed,treated as hysterical, or even yelled at. I know many of you with #MyalgicEncephalomyelitis can relate to what I’m saying.

#MedTwitter
2. I’ve grown to dread every visit to Drs & specialists. Not one of them has ever been truly interested in acknowledging that I have #ME, or taken it into account when ‘treating’ me. I use that word loosely, cos unless they acknowledge it,how can they fully treat me?

#MedTwitter
3. I’ve had #MyalgicE for 25 yrs, so that’s a sad indictment on the medical profession & governments who’ve ignored & maligned us for decades. Research funding has been abysmal, worldwide. Because it’s a common thread amongst people with #ME, I know it’s widespread.

#MedTwitter
Read 7 tweets
[Thread]
"No More Mr NICE Guy…" by Brian Hughes, a professor of psychology

thesciencebit.net/2020/11/21/no-…

An incisive blog that covers the NICE ME/#CFS guidelines, issues regarding trials of nonpharmacological interventions in general, appeals to authority, etc.

#MEcfs #MyalgicE
1/n
2/n

"The new [NICE] guidelines not only repudiate a heretofore favoured treatment approach for a particular illness, they also threaten to discredit an entire (albeit quirky) branch of medicine — and, for good measure, to cast clouds over significant swathes of psychology too"
3/n
"Here is an extract from expert testimony provided by Jonathan Edwards, professor emeritus of clinical medicine at University College London" [on the #PACETrial authors trying to justify their use of post-hoc criteria rather than their original criteria]

#MEcfs #CFS #CBT
Read 15 tweets
VIDEO-THREAD

Wichtiger Beitrag des WDR zum #LongCovid-Syndrom, das geschätzt 10-20% der Infizierten betrifft, mindestens 50.000 Menschen in 🇩🇪.

3 Gäste einer Familienfeier leiden noch nach Monaten an Spätfolgen

Es sprechen @HallekMichael & eine Charité-Medizinerin.

1️⃣ von 4️⃣:
Prof. @HallekMichael zu #LongCovid:

"Das ist wahrscheinlich noch nicht so sehr Bewusstsein sowohl der Öffentlichkeit als auch [...] der Ärzte, dass mit #COVID19 tatsächl. Langzeitkomplikationen verbunden sein können, die ernste Krankheiten für sich darstellen können."

2️⃣ von 4️⃣
Prof. Scheibenbogen, @ChariteBerlin zu #LongCovid:

"Was nicht so bekannt ist, [...] ist, dass auch jüngere Patienten, die anfangs gar nicht so eine schwere Infektion haben, anhaltend Symptome haben und viele von denen sind richtig krank & können nicht mehr arbeiten."

3️⃣ von 4️⃣
Read 16 tweets

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