🛸Advocacy Alienation

This is an interesting phenomena. It can affect attitude, advocacy priorities and nomenclature.

It's especially present in the area of illnesses that carry taboo or disbelief in the medical world.

There are different advocacy styles - which is great /1 🧵 Yet if an org can't
🛸 clearly define, say, interact or state issues that affects patients
-that are part of the discrimination against them
-that affects their quality of life and illness
-that are unjust

Then Houston, we have a problem - we have advocacy alienation /2

Those who have Long Covid, ME or chronic illness often experience a "double obscurity" (a quote from Margaret Atwood).

There is the obscurity of the illness and then the obscurity of societies inability to understand the illness. /1 Susan Sontag in her famous quote from 'Illness as Metaphor' captures this experience.

It's as if we enter into a different Kingdom, even if people can see us in plain view. We are other, it, a reminder that life can be unfair, painful and cruel. /2

🧵After the NHS #LongCvd conference we can see a peculiar split in view:
1️⃣ NHS clinicians & researchers - think they are empathetic, giving a good service, dealing with psychological needs. Researchers still invested in psychosocial & activity intervention.
more... 👇 /1 2️⃣ #LongCvd patients often feel neglected, have a poor experience of clinics, emphasis on the psychological is leading to an increase in social services referrals, poor knowledge & gaslighting in primary care. At risk through lack of masking. /2

📝This is the agenda from the NHS #LongCvd conference
It was filmed and will be online (H/T @JCeoltaSmith)

🙄Concern: why on earth is each hub allowed to wing it in woo wonderland?
🕵️‍♀️Where is the standardised investigations & treatment for POTS/ME/Microclots - that incl severe?

https://twitter.com/LongCovidAdvoc/status/1773381226792997199

🤔The majority of the conference seems to be on therapies 4 rehab. But how do people access rehab if the underlying pathology isn't treated?
🤔Kind of freaking out the CYP section was led by lead from SW Hub Bath lead fatigue service - Crawley territory

🧵Here's the poster presentations from the NHS #LongCvd conference
Whilst extensive they also show how far we are from actual treatments
There's alot of lifestyle intervention
& some concerning trends
👇 more /1
acrobat.adobe.com/id/urn:aaid:sc… From Cambridge efforts to give 'holistic' care & reassurance by giving a positive functional dx 😳
FND - Functional (not based in disease pathology) - ME
More mind-body crap
@CBMEgroup /2

❓Who is behind the ongoing narrative to paint kids & parents as 'anxious' & 'fearful' as the reason for persistent absence?
It's sinister & just wrong
No mention of #LongCovid
No safeguards against infection @karamballes

📑The new paper which reviews #LongCovid
💎Is a gem because
⚕️It offers a one stop paper that patients can give to their HCP
⚕️It's thorough
⚕️It's detailed in pathophysiology
📸 Fab graphics
🙏Thank you to all involved
@DrAsadKhan
sciencedirect.com/science/articl… 📸 Infographic on possible pathophysiology & symptoms
All covered in the paper

🧵Still marvelling at the wonder of the @Nature #LongCovid paper.
A few gems:
1. To see fatigue have ACTUAL pathologies listed 😲 2. The ONE sentence that could prevent so much harm and waste of 💰
WHY doesn't everyone know this 🤷‍♀️

📺🧵Key takeaways from @IndependentSage
@DrGrahamLJ on the long term risks of #SARSCoV2:
🔹Covid is a blood vessel disease
🔹1/2 billion virus in 1tsp of saliva
🔹Importance of mouth hygiene
🔹Viral load in mouth predictor of acute illness Clear explanation by @Sunny_Rae1 of #SARSCoV2 as:
🔹a blood vessel disease
🔹 pathophysiology of microclots & endothelial damage
🔹present in #LongCovid & a lesser degree in 'recovered' patients

UPDATE: Complaint about CISCO21 Long Covid Exercise Study
🚩Serious risk of patient harm
RESPONSE: PEM is primarily assoc. with other forms of exercise
Resistance bands do not rely on mitochondria
🤦‍♀️PEM can occur after any exertion
Axcella used resistance bands=mito dysfunction 🚩No screening for PEM
🚩 Inadequate consultation of scientific literature in #ME #PEM
RESPONSE: we've done PPI & PROMS 😬 (this literally doesn't make sense)

The psychologisation of a disease occurs when it is believed that psychological states cause or drive or sustain symptoms of that disease.
🚪Front door psychologisation: it's in your head, causes the disease
🚪Back door psychologisation: influences, sustains, drives the disease Gez & Danny's book looks fantastic and a real resource for those with & without #LongCovid.
Sincerely hoping that this view that: "there is a huge degree that our emotional state can drive symptoms by sending us into a state of sympathetic overdrive"
is not referenced...

📻 🧵 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

Awesome #LongCovid coverage in @thetimes - thank you to all who gave their precious energy to raise awareness 💙
@BinitaKane @doctorasadkhan @AntonyLoveless @amyismall @Daltmann10 Ben Pickett @NickGuthe @melheightman @maxwele2

https://twitter.com/BinitaKane/status/1558716174757765121

🧵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

https://twitter.com/FrancesMair/status/1516461378143465474

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

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

🌟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…

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