📻 🧵 on #LongCovid on @BBCScotland
🎙️Super interview with @K8Stott @DeansKevin & @drclairetaylor
Points on #microclots, lack of Long Covid Clinics in Scotland, Katie's trip to Germany, need for Rapid Treatment Trials for #LongCovid
1/6
With @DeansKevin
Reassuring to hear interest in #microclot research in the UK 💙
/2
@drclairetaylor talking about her #LongCovidClinic in Scotland 🙏
Dr Taylor is an incredible #LongCovid ally (esp through her Twitter account too)
/3
@drclairetaylor on #POTS & #MCAS in #LongCovid
-we really need more awareness of these conditions so 👏
/4
YES - we really do need Rapid Treatment Trials for #LongCovid like there was for Covid
/5
Full Interview here 👇📻
/6

Here is the BBC article on @K8Stott trip to Germany.
Good luck Kate 🤞
🏴󠁧󠁢󠁳󠁣󠁴󠁿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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More from @LongCovidAdvoc

Apr 21
🧵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
Read 16 tweets
Oct 22, 2021
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: 🧵
Vid 2: Dr Beate Jaegar
Vid 3: (Go Asad,debunking the quacks)
Read 4 tweets
Sep 27, 2021
🌟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?

To Sign⬇️⬇️
docs.google.com/document/d/1XV…
🌟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.

To Download, Print, Share⬇️
docs.google.com/document/d/1OE…
🌟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!
Read 7 tweets
Sep 26, 2021
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
Read 4 tweets

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