🏴Thank you to @Fionasstalker & @BBCScotland for covering #LongCovid so well
🏴Interviewing the right experts
🏴Highlighting the fact that #pwLC in Scotland are struggling to obtain care and treatment.
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🧵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
Super @BBCNews coverage of possible breakthrough treatment that dissolves the microclots, HELP Apheresis. Superb interview by @doctorasadkhan who tells it like it is!!! ✊ Let's hope this works, fast track funding is given & it's rolled out to all 🤞🙏
Vid 1: 🧵
🌟Patients' Charter for ME/CFS/PVFS🌟
🌟1st aim: for patients to put their signature for their needs to the Roundtable
It will be physically & electronically sent to NICE
Idea: to share on the 18th October to clearly state what we deserve?
🌟2nd Aim: Charter to be available to anyone who needs it (spoon saver).
It has been collectively written to help give a concise statement of the strong, supportive foundation for the medical care we deserve.
🌟3rd Aim: collaboratively create a Charter for #LongCovid #PVFS (Post Viral Fatigue Syndrome) is a term applicable to ME - yet this can also include #LongCovid #LongCovid community we need your help on this too - please sign🙏
There are many overlaps!
If there is media about ME 'militants' 'wars' (@Telegraph) then we can maybe assume the psychiatrists are worried about @NICEComms Guidelines.
It was a coordinated PR strategy used c.20yrs ago via the Science Media Centre when they threw a media pity party for themselves.
Let's look at Dr Michael Fitzpatrick:
-Part of the RCP network
-Connected to many of the orgs the group has set up:Sense about Science; Science Media Centre; Spiked; Institute of Ideas. Most funded by major biotech & pharmaceutical companies
Fitzpatrick cont
-Member of the Revolutionary Communist Party for most of his adult life (which wanted to turn the UK into a Trotskyist state) (whose the militant?)
-Writer for Living Marxism
- Holds & advocates the view that ME is a psychiatric