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Wondering about the terms PEM or pacing? Seen #StopRestPace & were curious as to what it referenced? Been in our community a long time & want easy ways to explain these concepts? Perhaps you have seen pacing misused & want to clear that up. We hope this thread helps! #pwME #PwLC 
Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, & sensory overload can trigger PEM.
Sometimes exertion is misunderstood as exercise. Exertion is defined here as anything that stresses or strains the system. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it.
#PEM #MECFS #LongCovid
#PEM #MECFS #LongCovid
🧑⚕️: #LongCovid ist psychosomatisch.
(gehört zu den funktionellen Körperbeschwerden)
🛌: Nein! Da stimmt körperlich was nicht!
🧑⚕️: Was wehrt ihr euch gegen die Tatsache, dass bei Krankheit die Psyche IMMER eine Rolle spielt?
(Depression, Bewältigung, PTBS…)
🛌: *Twittersturm*
(gehört zu den funktionellen Körperbeschwerden)
🛌: Nein! Da stimmt körperlich was nicht!
🧑⚕️: Was wehrt ihr euch gegen die Tatsache, dass bei Krankheit die Psyche IMMER eine Rolle spielt?
(Depression, Bewältigung, PTBS…)
🛌: *Twittersturm*
Ich glaube, wir müssen das noch ein paar Jahre schreiben, damit es sich auch wirklich einprägt:
Das Problem, wenn #pwME/#pwLC/#pwPV gesagt wird, etwas wäre psychosomatisch, ist nicht, dass wir uns
Das Problem, wenn #pwME/#pwLC/#pwPV gesagt wird, etwas wäre psychosomatisch, ist nicht, dass wir uns
psychischer Aspekte und Folgen der Erkrankung nicht bewusst wären, sondern, dass es um das Konzept der sogenannten "funktionellen Körperbeschwerden" geht, das weder ethischen Mindestansprüchen genügt, noch logischen Sinn ergibt.
Seeking #pwME (pre-COVID w/ or wo/ viral trigger OR COVID-triggered) for a £ online questionnaire examining medical stigma & social media use. Info below, direct questionnaire link & unroll @ end of 🧵. Please RT unrolled 🧵#MECFS #myalgicE #LongCovid #pwLC #NEISVoid(1/18)
Compensation: £15 Amazon voucher for full completion (emailed to you) with partial compensation available (2/18)
Eligibility criteria: a) 18 years+, b) View &/or engage with social media content posted by &/or about ME/CFS &/or Long-COVID at least weekly, c) Currently reside in/received diagnosis, & most or all care in UK (3/18)
£57,600 of @scotgov funding was used by @covidaidcharity and LGOWIT to create a dangerous #LongCovid Self Management course full of awful recommendations - exercising, positive thinking to heal LC, suggests fatigue & shortness of breath are anxiety, depression or lack of exercise
The course contains at best misleading and at worst factually incorrect and damaging information. Most of the content appears to be reused from another chronic illness management course, it is not specific to Long Covid. Only one section specifically mentions Long Covid.
These are all direct quotes from the course. These may be triggering.
- CBT en GET is not effective with ME(cfs) but harmful.
(It is however useful to separate ME from CFS more in🧵)
It is not effective for many Longcovid patiënts. Because many fulfill ME(CFS) criteria
@nrc @refdag
@Rovers_Chantal (leestip)
mayoclinicproceedings.org/article/S0025-…
(It is however useful to separate ME from CFS more in🧵)
It is not effective for many Longcovid patiënts. Because many fulfill ME(CFS) criteria
@nrc @refdag
@Rovers_Chantal (leestip)
mayoclinicproceedings.org/article/S0025-…
In the past, CBT and GET were studied and recommended for ME/CFS on the basis of the disease theory that “the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviors (avoidance [of activity]),”
leading to considerable deconditioning. However, GET and CBT studies have been widely criticized for their methodology, inadequate tracking of harms, and a disease theory that conflicts with the evidence of multisystem biologic impairment.
#MEAction is hosting a demonstration at the Washington Monument on May 12th! Join us there in person or show your support from home! Together, we will make our voices heard so we can command the attention of the government and the press. Find out more at millionsmissing.org.
The art installation will be at Washington Monument (northeast side) from 9 am to 3:30 pm ET.
The press conference will be held at 2 pm ET in DC & also livestreamed via our social media & on our page. (Press question, Email press@meaction.net )
meaction.net/event/millions…
The press conference will be held at 2 pm ET in DC & also livestreamed via our social media & on our page. (Press question, Email press@meaction.net )
meaction.net/event/millions…
We have an Activism from Home Toolkit for everyone joining in the critical effort of making sure our #MillionsMissing stories & effort are shared far & wide. #pwME #pwLC
bit.ly/MMAFH
#MyalgicEncephalomyelitis #LongCovid #MECFS
bit.ly/MMAFH
#MyalgicEncephalomyelitis #LongCovid #MECFS
Going to ask the obvious question & there's an obvious answer.
Why aren't majority of public #LongCovid clinics in #Ireland prescribing medications to manage patient's symptoms & improve quality of life? Uncontroversial meds eg low dose amytryptyline for pain, melatonin etc 🤔🤫
Why aren't majority of public #LongCovid clinics in #Ireland prescribing medications to manage patient's symptoms & improve quality of life? Uncontroversial meds eg low dose amytryptyline for pain, melatonin etc 🤔🤫
These meds have been used for a long time to manage these symptoms.GPs prescribe them every dy for these symptoms.Yet in a specialised clinic FOR LC, majority of ppl getting nothing
..could it be because some of those who'd be writing these scripts aren't convinced LCs physical?
..could it be because some of those who'd be writing these scripts aren't convinced LCs physical?
Please RT.
There should be no tolerance for allowing ppl who have outdated biased views on post viral illnesses like ME to be treating very ill & often already medically traumatised #LongCovid patients. The evidence is there. LC is a physical condition. ME also. Not tolerance!
There should be no tolerance for allowing ppl who have outdated biased views on post viral illnesses like ME to be treating very ill & often already medically traumatised #LongCovid patients. The evidence is there. LC is a physical condition. ME also. Not tolerance!
#TeamClots preprinted an important milestone in the microclot theory of Long Covid etiology. 🧵on the implications, as I understood them. TLDR: it looks like microclot burden will struggle as a standalone biomarker for LC; we should look deeper!
researchsquare.com/article/rs-273…
researchsquare.com/article/rs-273…
First, why is this an important milestone? This paper uses imaging flow cytometry to quantify the microclot burden in patients, which, AFAIK, is the first time that microclots have been measured in an objective and statistically robust way.
The flow cytometry method captured the following measurements: number of microclot objects per milliliter, mean microclot area, microclot count in area range.
1/5 A new #Covid_19 autopsy study finds viral persistence in the cartilage rings surrounding the bronchi in the lungs. These patients were testing negative by PCR for Covid-19 but had persistent lung inflammation - eventually resulting in their death. doi.org/10.1002/path.6…
2/5 POTENTIALLY, viral persistence in the bronchial cartilage could relate to the chest/rib pains experienced by many with Long Covid #pwLC and Post-Vax symptoms #vaccineinjuries This is one of the top 30 symptoms from my informal patient surveys. recoverfromlongcovid.com/vaccine-injure…
3/5 "antibodies against both spike and nucleocapsid revealed the frequent (70%) infection of bronchial cartilage chondrocytes and para-bronchialgland epithelial cells. In a few patients (19%), we also detected positivity in vascular pericytes and endothelial cells"
Eine aktuelle Studie von Wirth & Löhn stellt die Hypothese auf, dass die orthostatische Intoleranz, also die Verstärkung von Symptomen in aufrechter Position, bei #LongCovid auf eine
💠 schlechte Blutversorgung der großen Venen, der sog. Kapazitätsgefäße,
zurückgehen könnte.
💠 schlechte Blutversorgung der großen Venen, der sog. Kapazitätsgefäße,
zurückgehen könnte.
Man geht bisher allgemein davon aus, dass die orthostatische Intoleranz, manchmal einhergehend mit niedrigem Blutdruck und schnellem Herzschlag, durch eine verminderte Durchblutung des Gehirns verursacht wird.
Die Hirndurchblutung ist auf die Funktion des gesamten Blutkreislaufs angewiesen. Für die Kreislaufregulation wiederum sind u. a. die großen Venen wichtig. Bedarfsabhängig können sie viel Blut aufnehmen, so erklärt sich auch dass sie als „Kapazitätsgefäße“ bezeichnet werden.
#TREATME
Check out the charts for #longCOVID & #MECFS to see how enzymes like NK stacked up against aspirin, Plavix, DOACs (example: apixaban), and heparin. I won't do a deep dive until I gather more data & close the survey but wanted to share some data so far!🧵
Check out the charts for #longCOVID & #MECFS to see how enzymes like NK stacked up against aspirin, Plavix, DOACs (example: apixaban), and heparin. I won't do a deep dive until I gather more data & close the survey but wanted to share some data so far!🧵
Very Quick thoughts:
1) Oral anticoagulants alone looks subpar in #pwLC likely bc they only prevent clot formation & don't degrade existing microclots. Goal is to give body a break so it may clear clots on its own, but some may be too sick to achieve this.
1) Oral anticoagulants alone looks subpar in #pwLC likely bc they only prevent clot formation & don't degrade existing microclots. Goal is to give body a break so it may clear clots on its own, but some may be too sick to achieve this.
1) cont..
Also note small sample size, so can't draw strong conclusions yet.
2) Many #pwLC may have hyperactivated platelets so it would stand to reason than antiplatelet meds would help. While just 38% reported aspirin ALONE helped, 60% benefited from dual antiplatelet therapy.
Also note small sample size, so can't draw strong conclusions yet.
2) Many #pwLC may have hyperactivated platelets so it would stand to reason than antiplatelet meds would help. While just 38% reported aspirin ALONE helped, 60% benefited from dual antiplatelet therapy.
The outrage and bewilderment I feel when I see ME/CFS & Long COVID researchers/advocates/HCWs maskless at indoor events...🤯
Maskless LC advocate? Isn't that an oxymoron?
I wonder: How much do these unmasked "allies" actually care about the people they claim to support?
🧵
Maskless LC advocate? Isn't that an oxymoron?
I wonder: How much do these unmasked "allies" actually care about the people they claim to support?
🧵
Are they so ignorant that they believe "masks don't work"? or that vaccines stop transmission? or that Paxlovid is a panacea?
-If they ARE that uneducated, how can their work in the field be trusted?
-And if they ARE properly educated but STILL choose not to mask...😵💫
-If they ARE that uneducated, how can their work in the field be trusted?
-And if they ARE properly educated but STILL choose not to mask...😵💫
What are some examples of best practice (or at least trying) to diagnose, support & treat #LongCovid and #pwME? 1/
We hear the horror stories - because this, unfortunately, is standard in many if not all countries. And we must (must) call out mistreatment & barriers to care.
But please tell me, what are some times things went well? Needs met? Easy access? Treated well? #MECFS #pwME #pwLC 2/
But please tell me, what are some times things went well? Needs met? Easy access? Treated well? #MECFS #pwME #pwLC 2/
Here’s one example, the late Dr Don Lewis in Melbourne treated #MECFS (especially gut microbiome aspect).
Environmentally, His building was purposely set up for the needs of patients (imagine!): big wide couches to lay flat in waiting room, low/no lights, quiet / low stimuli 3/
Environmentally, His building was purposely set up for the needs of patients (imagine!): big wide couches to lay flat in waiting room, low/no lights, quiet / low stimuli 3/
Reviewing preliminary data from the survey (n=1,750!), here are some early observations on a few treatments:
1) Both #pwLC and #pwME benefit remarkably similarly from LDN. Check out the almost identical survey results for overall benefit & number of symptoms improved.
1) Both #pwLC and #pwME benefit remarkably similarly from LDN. Check out the almost identical survey results for overall benefit & number of symptoms improved.
2) People are more likely to benefit from CoQ10 at doses 200 mg or higher, but even then, their overall condition improves only slightly.
2) Both #pwME & #pwLC benefit from anticoagulants (more on this another time - very interesting stuff!).
2) Both #pwME & #pwLC benefit from anticoagulants (more on this another time - very interesting stuff!).
3) There is a clear increase in benefit when adding on antiplatelets to anticoagulants, but aspirin alone does not help many (78/255).
4) Interestingly, HEPARIN may be more beneficial in both pwME & pwLC than direct oral anticoagulants.
4) Interestingly, HEPARIN may be more beneficial in both pwME & pwLC than direct oral anticoagulants.
ATTENTION FRIENDS! Can you help us reach our new goal?
We want to get to 150,000 signatures before March 15th 2023.
On March 15th, International #LongCovid Day, we want to take the campaign to Westminster!
We want to get to 150,000 signatures before March 15th 2023.
On March 15th, International #LongCovid Day, we want to take the campaign to Westminster!
It’s a big ask. We know. It means asking you to share this thread, contact your elected representatives, telling everyone you know, sharing this across social media. More than once. But we are about 39,000 off our goal and we think we can do it. #longcovid #pwLC #FBLC
It is pretty clear to us that there is a growing number of people who believe #keyworkers with #longcovid who are in difficult straits now are in this position because of their job. It’s obvious you all agree with @AppgCoronavirus recommendations about a compensation & pension
Any #pwLC or #pwME tried CITOCOLINE?
Citocholine = cytidine + choline
Cytodine metabolizes quickly to uridine. Choline & uridine cross the blood brain barrier, promoting neuronal membrane phospholipid synthesis & reducing peroxidation.
ncbi.nlm.nih.gov/pmc/articles/P…
Citocholine = cytidine + choline
Cytodine metabolizes quickly to uridine. Choline & uridine cross the blood brain barrier, promoting neuronal membrane phospholipid synthesis & reducing peroxidation.
ncbi.nlm.nih.gov/pmc/articles/P…
In COVID and perhaps ME, the blood brain barrier can become leaky, precipitating microglial activation and neuroinflammation.
In vitro studies have found that citocoline improves the endothelial barrier function impaired by hypoxia.
ncbi.nlm.nih.gov/pmc/articles/P…
In vitro studies have found that citocoline improves the endothelial barrier function impaired by hypoxia.
ncbi.nlm.nih.gov/pmc/articles/P…
Other potentially beneficial effects of citocoline:
-stimulates ACTH & may ⬆️ cortisol
-improves expression of SIRT1, thereby supporting nerve cells, ⬇️ NF-KB & ⬆️ autophagy
-enhances norepinephrine, serotonin, dopamine, & acetylcholine
-improves cerebral blood flow
-stimulates ACTH & may ⬆️ cortisol
-improves expression of SIRT1, thereby supporting nerve cells, ⬇️ NF-KB & ⬆️ autophagy
-enhances norepinephrine, serotonin, dopamine, & acetylcholine
-improves cerebral blood flow
HIGH-DOSE EPA for LongCovid or ME/CFS?
Recently I spoke w/ an MD who has treated ~40 #pwLC with an Rx omega-3 fatty acid similar to EPA known as icosapent ethyl (IPE, brand name Vascepa) w/ promising results. Turns out, it may help #pwME too.
Details👇
pharmd.substack.com/p/high-dose-ep…
Recently I spoke w/ an MD who has treated ~40 #pwLC with an Rx omega-3 fatty acid similar to EPA known as icosapent ethyl (IPE, brand name Vascepa) w/ promising results. Turns out, it may help #pwME too.
Details👇
pharmd.substack.com/p/high-dose-ep…
Even patients who had suffered from Long COVID for over two years reportedly experienced improvements in sense of taste & smell, fatigue, sleep, joint pain, brain fog, and hair/nail growth.
onlinescientificresearch.com/articles/propo…
onlinescientificresearch.com/articles/propo…
This MD also treated ~140 acute COVID pts w/ IPE and reportedly none of them developed LC. The MITIGATE trial is currently investigating the ability of Vascepa (IPE) to reduce morbidity & mortality in a cohort of adults with URIs including SARS-CoV-2.
ncbi.nlm.nih.gov/pmc/articles/P…
ncbi.nlm.nih.gov/pmc/articles/P…
People with #MECFS #LongCovid
Do you want to know who the doctor-activists who are lynching @NICEComms for banning graded exercise therapy & recommending pacing are?
Here’s the list ⬇️
FND = functional neurological (conversion) disorder
MUS = medically unexplained symptoms
Do you want to know who the doctor-activists who are lynching @NICEComms for banning graded exercise therapy & recommending pacing are?
Here’s the list ⬇️
FND = functional neurological (conversion) disorder
MUS = medically unexplained symptoms
Of course, they are led by Peter White, the lead investigator of the PACE trial that NICE thoroughly debunked, and members of a (bio)psychosocial collaboration for “post-infectious fatigue” called COFFI.
A prime example of eminence-based medicine.
s4me.info/threads/snippe…
A prime example of eminence-based medicine.
s4me.info/threads/snippe…
If you have #LongCovid, I’m sure some of these names will be familiar to you already.
Be warned, #pwLC: that many proponents of “functional neurological disorders” (FND) co-authored this paper shows how much they want to get their hands not just on #MECFS but on LC too.
Be warned, #pwLC: that many proponents of “functional neurological disorders” (FND) co-authored this paper shows how much they want to get their hands not just on #MECFS but on LC too.
For @PopSci, I reported on #LongCovid clinics, or "post-COVID care centers." Though these centers specialize in the disease, patients still face rejection, gaslighting, outdated (and harmful) therapies, as well as long lists of unanswered questions.
popsci.com/health/long-co…
popsci.com/health/long-co…
1/ The first barrier to many of these clinics is the requirement of a positive test & referral. Many #pwLC were sick before tests were available & with new variants, tests aren't always accurate. Affording a PCP is also a privilege many don't have.
popsci.com/health/long-co…
popsci.com/health/long-co…
2/ If patients clear these barriers, the usually wait months, sometimes even a year+ to be seen. With ~400 clinics in the U.S. and over 16 million #pwLC, thats about 40,000 patients per clinic if all seek care.
Many don't bc of distance, cost, & more
sciencenews.org/article/long-c…
Many don't bc of distance, cost, & more
sciencenews.org/article/long-c…
Dear Medical Doctors, if you want to help patients with complex chronic diseases (and they sincerely need your support!), here are some important wishes from a patient’s perspective.
1/
1/
1. Believe the patients
Believe them their perception, their symptoms, their adverse reactions to treatments, their degree of suffering. They are the experts for their own symptoms. They know their bodies and reactions better than anyone else.
2/
Believe them their perception, their symptoms, their adverse reactions to treatments, their degree of suffering. They are the experts for their own symptoms. They know their bodies and reactions better than anyone else.
2/
Do not deny them their perception, even if some of their descriptions may seem atypical to you. Always believe patients more than medical reports
3/
3/
VIAGRA (Sildenafil) for #LongCovid or #MECFS?🧵
I've heard from several #pwLC & ME who reported their symptoms moderately to vastly improved following Viagra use.
Are these just wacky anecdotes or is there scientific basis for these positive effects?
Answer: the latter🧵
I've heard from several #pwLC & ME who reported their symptoms moderately to vastly improved following Viagra use.
Are these just wacky anecdotes or is there scientific basis for these positive effects?
Answer: the latter🧵
VIAGRA (sildenafil) & ME/CFS TRIAL
In 2008, Dr T Friedman hypothesized that Viagra would help ME/CFS patients by improving cerebral blood flow. He carried out a tiny placebo-controlled trial (n=12).
2/x
clinicaltrials.gov/ct2/show/NCT00…
In 2008, Dr T Friedman hypothesized that Viagra would help ME/CFS patients by improving cerebral blood flow. He carried out a tiny placebo-controlled trial (n=12).
2/x
clinicaltrials.gov/ct2/show/NCT00…
Change in Fatigue Impact Scale questionnaire suggested benefit with Viagra over placebo. However, only 5 on Viagra & 6 on placebo completed the trial & the study was never published.
Dosing:
Week 1: 25 mg TID*
Week 2: 50 mg TID
Weeks 3-6: 100 mg TID
*TID = 3 times daily
3/x
Dosing:
Week 1: 25 mg TID*
Week 2: 50 mg TID
Weeks 3-6: 100 mg TID
*TID = 3 times daily
3/x
‼️SURVEY UPDATE‼️
How has COVID-19 vaccination affected your #LongCovid symptoms?
With 654 responses to this question so far:
52% no change (or fleeting changes ≤ 1 wk of vaccine)
28% worsened❌
17% improved✅
3% a mix
How long did benefits or relapses last? See next tweet⬇️
How has COVID-19 vaccination affected your #LongCovid symptoms?
With 654 responses to this question so far:
52% no change (or fleeting changes ≤ 1 wk of vaccine)
28% worsened❌
17% improved✅
3% a mix
How long did benefits or relapses last? See next tweet⬇️
Of the 111 who IMPROVED post-vaccination, ~50% improved long-term.
Thus ~8.5% of those vaxxed with #LongCovid enjoyed some degree of LONG-term benefits post-vaccine, while another 8.5% experienced just TEMPORARY benefits (from several weeks up to several months).
2/x
Thus ~8.5% of those vaxxed with #LongCovid enjoyed some degree of LONG-term benefits post-vaccine, while another 8.5% experienced just TEMPORARY benefits (from several weeks up to several months).
2/x
In Long Covid sufferers who IMPROVED with vaccination, the most commonly reported experience was a LONG-term & SLIGHT improvement (29/654=4.4%).
The most RARE experience was significant long-term improvement (8/654 = 1.2%).
What about those who worsened? Read on. ⬇️
3/x
The most RARE experience was significant long-term improvement (8/654 = 1.2%).
What about those who worsened? Read on. ⬇️
3/x
International friends with #LongCovid and/or #MECFS, international researchers, orgs & clinicians - you are allowed to submit your thoughts & experience to the Australian Parliamentary Inquiry into LC. You can help shape the future of treatment & care Australians #pwLC: ➡️ 1/🧵
What does this mean? The government in Australia has formed a committee - members of parliament, including several medical doctor MPs - to hear people’s stories of Long Covid AND experiences of Repeat SARS2 infections.
They will write a report. 2/ 🧵
aph.gov.au/Parliamentary_…
They will write a report. 2/ 🧵
aph.gov.au/Parliamentary_…
I’m told Australians and international individuals & organisations are encouraged to share 📄 written, ☎️ audio or 📱 video submissions about one or more “Terms of Reference”:
Point 6 seeks to understand “Best Practice” including internationally
3/🧵
aph.gov.au/Parliamentary_…
Point 6 seeks to understand “Best Practice” including internationally
3/🧵
aph.gov.au/Parliamentary_…
🧵
12-page report on "International Conference
ME/#CFS & #LongCOVID – Treatment & Rehabilitation"
omt.org/wp-content/upl…
Conference website:
omt.org/me-cfs-long-co…
I found the report good though I'd be surprised if some annoying stuff hadn't been said by someone
#MEcfs
1/
12-page report on "International Conference
ME/#CFS & #LongCOVID – Treatment & Rehabilitation"
omt.org/wp-content/upl…
Conference website:
omt.org/me-cfs-long-co…
I found the report good though I'd be surprised if some annoying stuff hadn't been said by someone
#MEcfs
1/
2/
"[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
"[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
