Long Covid Advocacy💙 Profile picture
Jun 20 3 tweets 2 min read Twitter logo Read on Twitter
😟Sigh
PEM still not mentioned or discussed
Rest yes but why? PEM
Giving lifestyle advice is not proportionate or equitable & minimises #LongCovid
-good diet & rest need £ & privilege
This exercise advice is plain dangerous 😳
🙏We deserve better
@xandvt ImageImage
🛑This is minimum symptom management requirements
Yet many of us
🚨Don't have the energy to talk to someone
🚨People don't want to listen
🚨Don't have the energy to take a walk everyday
🚨Have sleep disturbance & pathology so can't sleep
Advice that can be given
- being told about PEM
- get people to be checked for POTS, MCAS
- tell people it's a serious pathology often as disabling as a stroke or Parkinson's or late stage cancer
-it would not be acceptable for these conditions to ONLY be given lifestyle advice.

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More from @LongCovidAdvoc

Apr 28
❓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 Image
#CleanAir is what is needed to deal with Persistent Absence. We need to prevent Airborne disease. transmission
Due diligence @JournoKellyAnn
Read 4 tweets
Apr 20
📑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… Image
📸 Infographic on possible pathophysiology & symptoms
All covered in the paper Image
📸 #SARSCoV2 receptor binding, entry into host cell, replication, and transport to other tissues Image
Read 4 tweets
Jan 16
🧵Still marvelling at the wonder of the @Nature #LongCovid paper.
A few gems:
1. To see fatigue have ACTUAL pathologies listed 😲 Image
2. The ONE sentence that could prevent so much harm and waste of 💰
WHY doesn't everyone know this 🤷‍♀️ Image
3. Widespread lack of knowledge about post viral and Misformation
👀 Looking at you BPS #WesselySchool Image
Read 10 tweets
Oct 28, 2022
📺🧵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
Summary by @Sunny_Rae1
Read 5 tweets
Aug 28, 2022
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)
🚩Lack of consideration to personal testimony that exercise does not help conditions with PEM
RESPONSE: we've done PROMS, open hypothesis - we're open to it not being helpful, there's no evidence that exercise can cause permanent damage to C19 patients
Read 11 tweets
Aug 27, 2022
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...
Gez is more than welcome to have this as a personal view. Yet it is the reasoning that those who psychologise the disease can take
It is why we have 'integrated' care & research that focus on CBT as stress and anxiety are seen are sustainers of the illness.
There is no evidence
Read 11 tweets

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