Thread by @LongCovidAdvoc

🧵Serious Red Flags for the #CISCO21 #LongCovid Study
Researchers please listen to patients concerns & expand your knowledge to the history of #MECFS
You have a chance to stop patient harm

1. No mention of #PEM #PESE in the literature
After repeatedly asking if they screen for #PEM or take this into account - they have not responded in the affirmative.
This is the nub of the issue
75% of #Longhaulers have #PEM
46% are eligible for an #MECFS diagnosis

This means that our bodies cannot process exercise - think sugar diabetes
There is no magic where by giving us exercise because we can't do it means we will magically be able too

They are taking those who are not just Deconditioned through a hospital stay & you need to be exercise impaired to be eligible for the study. This means you will highly likely have PEM & be at risk

The basis of the study is on muscle weakness and wasting - a Deconditioning model. This is out of date and can't be treated with exercise - please look at #MECFS research

The rationale for the study is there is a gap in therapy. There is a gap in therapy because there had been no decent research - you fill the gap by doing this research in pathophysiology & treatment.
We are losing count of the number of rehab exercise studies
Look at #MECFS

The Shuttle Walk test is genuinely dangerous as its aim is to push someone to their limits.
Serious danger to relapse, worsening of symptoms and #PEM

The study visits are exercise based and the treatment is exercise based. This is seriously risky and giving people the false hope they will get better and be tempted to push through to get better.

Potential Risks - this is not true, please do your research. You are not only likely to feel as bit tired for a short time. You can be pushed permanently to a more severe state of illness. This has happened time and again in #MECFS

2033 Completion date?

Here are the details to make a complaint

This is essentially researchers meaning well but not having done their homework It works from a Deconditioning model that there is muscle wastage and if you fix that then you fix the problem.This doesn't work as our anaerobic metabolism doesn't work. That is what you need to fix

@FrancesMair @UofGlasgow @agcolehamilton please listen 👂
Don't allow more harm to come to patients. Work with experts on this field and don't turn a blind eye
All good learning 🙏👇
@4Workwell @LongCOVIDPhysio @DoctorsWithME @MEActNet @PhysiosForME @respphysio @hope4mefibroni

There is a chance that if someone has been in hospital and it's Deconditioned but recovered and doesn't have PEM then this may be of benefit. But you are not only doing this and expanding it to all with #LongCovid without a safety net or way to report harm.

@ColinBerryMD @keithgeraghty @davidtuller1 @BinitaKane @sunsopeningband @elisaperego78 @ABrokenBattery @MEFoggyDog @ahandvanish