Lmst

#ME #LongCovid #Lyme #POTS #PEM #LivesWeCannotLive @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy #Justice4ME @ashleydaltonmp.bsky.social@bsky.brid.gy @decodemestudy.bsky.social@bsky.brid.gy @georgemonbiot.bsky.social@bsky.brid.gy @georgemonbiot.bsky.social@bsky.brid.gy @profstevegriffin.bsky.social@bsky.brid.gy @davidjoffe64.bsky.social@bsky.brid.gy #GMC

This Week in Disbelief

This is a cartoon in three boxes

Box one Heading - Are Junior Doctors really having a hard time?

Box two - a woman using a wheelchair is at the bottom of a flight of steps. She is holding a placard which says “#ME
#LONG COVID #DISABILITY #POVERTY” and is facing a staircase labelled
Heating or eating, Medical Abuse,
Motability Cuts, Millions Missing”

Box three - Wise Car is saying “I guess that really depends on who you compare them with”

The cartoon maker is #FanningTheFlames

Medscape, en global plattform för medicinska nyheter, rapporterar att det inte finns någon evidens som stödjer användandet av gradvis utökad träning (GET) vid ME. #medscape #läkare #GET #PEM #mecfs #postcovid #läkartidningen themeinquiryreport.com/2025/12/10/m...

Medscape: Ingen evidens för GE...

Well done & thanks to these healthcare professionals (PTs/similar) for this new e-letter 👏

"In the Long Run, Misleading Participants Will Harm More Than Help in Long COVID Research"

https://bmjopen.bmj.com/content/15/11/e102112.responses#in-the-long-run-misleading-participants-will-harm-more-than-help-in-long-covid-research

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#PEM @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Published on: 9 December 2025
In the Long Run, Misleading Participants Will Harm More Than Help in Long COVID Research
Todd E. Davenport, Professor & Chair University of the Pacific, Workwell Foundation
Other Contributors:
Staci R. Stevens, Exercise Physiologist
Mark A. Faghy, Professor
Jessica DeMars, Respiratory Physiotherapist
J. Mark Van Ness, Professor & Chair
Respect for persons, beneficence, and justice are bedrock ethical principles in science. They are especially important when studying vulnerable populations. Billias et al. argue that deception is necessary to assure the internal validity of their exercise study involving people living with long COVID.[1] Here, we assert the use of deception is ethically indefensible and scientifically unnecessary in this population. It undermines informed consent, increases risks for harms, exploits the vulnerability of participants, and erodes trust in science and health care, all while exploring a question that already has been asked and answered satisfactorily enough to inform clinical recommendations.

'Verdovingsmiddel lidocaïne helpt tegen postcovid'

"Een behandeling op basis van een bekend verdovingsmiddel, lidocaïne, biedt verlichting bij mensen met langdurige klachten na Covid-19. Dat blijkt uit Nederlands onderzoek onder 103 patiënten die al 2,5 jaar kampten met postcovid. Bij driekwart van de deelnemers verbeterden de klachten in de loop van negen maanden, zestien mensen konden zelfs stoppen of afbouwen."

"Bij mensen met postcovid die voor de behandeling van zenuwpijn kwamen, verdween niet alleen die pijn, maar begonnen ook andere neurologische klachten duidelijk af te nemen, waaronder hersenmist, malaise na inspanning, overprikkeling en autonome klachten."

"In deze studie gebruikten artsen een speciale bereiding van het middel, waarbij het werd gekoppeld aan een groot suikermolecuul, cyclodextrine. Hierdoor konden patiënten het zelf thuis toedienen."

"Gemiddeld waren bij alle patiënten 28 van de 30 symptomen verbeterd – alleen haaruitval en misselijkheid niet. Bij geen van de opgeknapte patiënten was er een terugval te zien naar de ernstige klachten die ze voor de behandeling hadden."

https://www.nrc.nl/nieuws/2025/12/09/verdovingsmiddel-lidocaine-helpt-tegen-postcovid-a4914849

https://archive.ph/SFl7S

#gezondheid #PostCovid #LongCovid #PAIS #PEM

Note: PEM stands for post-exertional malaise, a hallmark of ME/CFS that is also found in some Long Covid patients. Many Long Covid patients meet the ME/CFS diagnostic criteria.

PEM fact sheet:

https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-606969

#MEcfs #LongCovid #PEM

@herbster @mecfs

PEM (post exertional malaise) can be difficult to explain. But I think orthostatic intolerance is even harder to explain.

People wonder how just standing still - or even sitting upright but I can do that longer - can be a problem. I have a lot more trouble standing still for a few minutes than walking for a few minutes. I must sit down to shower or brush my teeth.

Two helpful videos:

https://www.youtube.com/watch?v=X3Ym8rnYk_4

https://www.youtube.com/watch?v=GIkS4w3tIg8

#MEcfs #PEM #OrthostaticIntolerance

Probably the best week I've had at least four years.

#MECFS #PEM #Pacing #Recovery2025

I think some of my pain is anticipatory. The pain is, and always has been, my body trying to convince me to slow down.

Yesterday, I had plenty of energy aside from what the pain drew away from me. So now I just have to convince my body that I really truly have gotten the message. I've lied to it so many times that it doesn't believe me.

Last night, I was still hurting after work, and while watching a thing, I decided to lay down (for ten minutes) after the thing was over. I immediately started to feel better, before the show was over!

BUT!!! I followed through anyway. I wanted my body to be rewarded for easing up, to let it know I don't need it screaming at me for me to listen.

#MECFS
#PEM
#Pacing
#Recovery2025

A really good week for me.

I still have high-pain days, which makes it hard to believe sometimes that I'm healing.

But the signs of improvement are unmistakable. I'm really only a couple of weeks in to having a sustainable amount of work and pressure, where I can pace myself at leisure, where I'm not having to force myself through pain and exhaustion multiple times a day, even through things as small as making lunch.

Even though my pain yesterday ranged between 4-8, and I had "pain-fog" (it's brain fog due to hurting too much to focus on anything else), my emotional outlook remained at peak, and I worked for what to is me a full day (2.5 hours). In fact, I clocked almost ten hours this week, and ten hours hasn't been a realistic goal for most of the year. (Eight hours had become my strettttcccch goal!) Some of that was even being alert on a long, important call where I was the driver of the conversation.

So I'm still getting fatigue and pain, but my capacity has increased. I'm doing well on the self-restraint of not taking on too much, or thinking "Oh, I can push myself to do one more thing," or even pushing too hard on my recreational activities.

The "push myself on one more thing" was necessary, because the load was larger than my capacity. So I had to work in whatever I could while capable. Which was not sustainable. Being "capable" is not the same as avoiding fresh injury, and that's not the same as space to heal. I've had to work hard to carve that out.

#MECFS #PEM #Pacing #Recovery2025

#ME #LongCovid #Lyme #POTS #PEM #LivesWeCannotLive @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy #Justice4ME @ashleydaltonmp.bsky.social@bsky.brid.gy @decodemestudy.bsky.social@bsky.brid.gy @thelancet.com@bsky.brid.gy @nhsengland.bsky.social@bsky.brid.gy @georgemonbiot.bsky.social@bsky.brid.gy @profstevegriffin.bsky.social@bsky.brid.gy @davidjoffe64.bsky.social@bsky.brid.gy

This is a cartoon/poster

It says “Many doctors, psychotherapists, and psychiatrists are good people, just don't trust the ones who try to tell you that post-infectious illness is a mental health condition!”

The cartoon maker is #FanningTheFlames

"The Small Life: Calculating Worth with Diminished Returns"

https://substack.com/home/post/p-180446599

"This isn’t a redemption narrative where chronic illness becomes a blessing in disguise. It’s not. It’s still limiting, frustrating, and profoundly unfair.

But within severe constraints, something unexpected happens … You stop trying to do everything and start asking what actually matters."

@longcovid
@mecfs

#LongCovid #MEcfs #PwME #PEM #PostExertionalMalaise #ChronicIllness

"National survey finds virtual health ‘essential’ for Long COVID support: SFU report"

https://www.sfu.ca/fhs/news-events/news/2025/national-survey-finds-virtual-care-essential-for-long-covid-care.html

“These preliminary results suggest that virtual care is particularly helpful for people with Long COVID who face barriers accessing health services such as rural, racialized and 2SLGBTQIA+ patients …”

(adding ME/CFS tags since PEM was first identified & named in ME patients)

@longcovid

#Canada #LongCovid #MEcfs #PwME #HealthCare #TeleHealth #Virtual #PEM #PostExertionalMalaise

“Many of the 621 survey respondents from across the country shared how lifesaving and essential these virtual services are in providing accessibility to care that reduces risk of infections, travel time, and PEM”, shared FHS Research Fellow Kayli Jamieson, who also has Long COVID herself.

PEM, or Post-Exertional Malaise, is common in many people with Long COVID, meaning that physical, mental, or sensory activity triggers can cause a flare-up in symptoms lasting from hours to weeks. It is one of many factors that contributes to the chronic and frequently disabling nature of Long COVID.

Medical Gaslighting statt Pflegeleistungen

„Ich wünsche mir, dass die Gesellschaft sieht, dass wir hier gerade einen der größten Gesundheitsskandale der letzten Jahrzehnte erleben und mit uns oder vor allem für uns auf die Straße geht.“

#MECFS #PEM #PostExertionalMalaise #Covid #MUT #Gesundheitssystem #PVA

https://fm4.orf.at/stories/3051014/

#ME #LongCovid #Lyme #POTS #PEM #LivesWeCannotLive @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy #Justice4ME @ashleydaltonmp.bsky.social@bsky.brid.gy @decodemestudy.bsky.social@bsky.brid.gy @thelancet.com@bsky.brid.gy @nhsengland.bsky.social@bsky.brid.gy @georgemonbiot.bsky.social@bsky.brid.gy @profstevegriffin.bsky.social@bsky.brid.gy @davidjoffe64.bsky.social@bsky.brid.gy

RE: https://bsky.app/profile/did:plc:vihj6n4trxxabx2zi624l4bu/post/3m6rmu7uwbs2z

#ME #LongCovid #Lyme #POTS #PEM #LivesWeCannotLive @meassociation.org.uk@bsky.brid.gy @longcovidsupport.bsky.social@bsky.brid.gy #Justice4ME @ashleydaltonmp.bsky.social@bsky.brid.gy @decodemestudy.bsky.social@bsky.brid.gy @thelancet.com@bsky.brid.gy @nhsengland.bsky.social@bsky.brid.gy @georgemonbiot.bsky.social@bsky.brid.gy @profstevegriffin.bsky.social@bsky.brid.gy @davidjoffe64.bsky.social@bsky.brid.gy

The cartoon is called ‘This week in disbelief….’

There are 3 boxes.

In the first box is an image from the Guardian with the title ‘this week in The Guardian’. There is a photo of Wes Streeting Health secretary with the word “Wes Streeting calls the A ‘impossible’ and says they made ‘misleading’ claims

In box 2 a woman is walking in the rain. She’s saying “Who’d have thought the BMA could be full of misguided careerists making misleading claims?”

In Box 3 Wise Cat is saying sarcastically “Certainly not the 1.3m people with #ME being disabled and killed by shamefully misinformed doctors”

The cartoon maker is #FanningTheFlames

#electrive

„ #Elektromobilität – Weg aus oder Auslöser der #Automobilkrise?“ – Achim #Kampker, #PEM d. #RWTH #Aachen

Bei der Jubiläumsausgabe unserer Online-Konferenz sprach Prof. Dr. Achim Kampker, #Lehrstuhlleitung, #PEM der #RWTH Aachen, darüber ob die #Elektromobilität der Weg aus oder der Auslöser der #Automobilkrise sein könnte.

https://m.youtube.com/watch?v=PJSe5Cgfxws

#mecfs #LongCovid

Wearable devices measuring heart rate, and heart rate variability are helpful for managing #pem in people with #energylimitingconditions

https://madevisible.podbean.com/e/14-wearable-technology-and-patient-led-innovation-with-dr-david-putrino/

The Visible Band 2.0, or Garmin devices seem to be the most popular products for research and treatment, but have ethical drawbacks and privacy concerns (subscriptions, vulnerable to enshittification, repair hostile).
1/x

"JAMA Touts #LongCOVID Exercise Trial with Clinically Insignificant Results; Most LC Exercise Trials Ignore #PEM, Per Sick Times" By David Tuller

https://virology.ws/2025/11/25/trial-by-error-jama-touts-long-covid-exercise-trial-with-clinically-insignificant-results-most-lc-exercise-trials-ignore-pem-per-sick-times/

An extra problem is people think that patients can keep improving while an exercise program may simply push them to their conditioning ceiling from a slightly lower point

@longcovid
#PASC #PwLC #postcovid #postcovid19 #Covidlonghaulers #PostCovidSyndrome
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19

That wasn’t the only issue with the MCID in the trial. In my prior post, I forgot to mention another critical point: Whatever benefits participants in the intervention arm did or did not attain, the final results in both groups remained far below the average performance of healthy adults on the ISWT.

Overall, the participants achieved a mean distance of 389 meters at the end of the 12-month exercise program. In contrast, a 2013 study of “age-specific normal values for the ISWT” found a distance of 824 meters for 40- to 49-year-olds, 788 meters for 50- to 59-year-olds, 699 meters for 60- to 69-year-olds, and 633 meters for 70-year-olds and up. In other words, the participants in this trial remained seriously disabled across the board—another salient detail ignored by the investigators.

To hype statistically significant but minimalist results as if they demonstrated substantial improvement is obviously not helpful to patients. It is also deceptive. No one relying on the JAMANetworkOpen paper or the JAMA news-in-brief follow-up for clinical guidance would have any idea how poorly both arms did compared to healthy adults unless they took the time to dig a bit more deeply on their own.

Iedereen kent wel iemand of meerdere mensen met #PAIS #ME #CVS #LongCovid #Lime #Pem enz
Zij zijn meestal onzichtbaar en aan huis of bed gekluisterd. Ze zijn #NietHersteld
Er is veel meer onderzoek nodig naar deze ziekten en naar mogelijkheden van herstel.
30 november is er in Den Haag een demonstratie #PaisProtest om hiervoor aandacht te vragen.
Laat jouw stem ook horen, alle stemmen gelden, ook online!

#PEM #LeonardJason #DSQPEM2 #Questionnaire

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI #ELC

Via Tom Kindlon's ME CFS & related page: News, Research and more on Facebook, @tomkindlon here.

Link to explorationpub.com:

https://www.explorationpub.com/Journals/ent/Article/1004116?fbclid=IwdGRleAOT9H9leHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xNzM4NDc2NDI2NzAzNzAAAR476-toqBdRCVEFXatvHemS9Da2SvmcK6S2r_TY13sSQ_YUt8m_n5pD1OM1Zg_aem__CMSqSImOPkVVo2i70V_xA

#PEM

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