Writer, Advocate & Patient. Severe Post-Viral Dysautonomia, ME & MCAS (long COVID) Writing Wrongs from the Sickbed. Exposing the UK Post-Viral Care Scandal...
UK
Joined August 2026
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"Hope to see you soon" is a good indicator as to who's friendship/love is truly unconditional. Do they at least try to visit you in your bedroom within one year of saying this? (health/distance permitting ofc) /1
#longcovid #MECFS #dysautonomia #POTS #chronicillness #disability
It can also hit home that if you hadn't put all the effort into arranging meetups and keeping the relationship going, you likely would have drifted apart much sooner. At first this is sad, but then it can become a relief and give some closure /4
It also deepens your gratitude for the former category, which helps restore some hope in humanity at a time of such systemic abandonment/5
Polly Patterson retweeted
Looking forward to reading this and sharing it with our newsletter subscribers - looks like an important read for therapists trying to understand #MECFS patients' experiences...
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Bc the mechanisms that ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack
ALT Screenshot of the header of a published paper: Studies in History and Philosophy of Science Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis Chloé de Canson
📄 "I present a case study, that of myalgic encephalomyelitis, wherein, due to severely dysfunctional institutional knowledge production and transmission mechanisms, the medical aspects of the illness are on the whole better understood by sick people than by their doctors."
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Bc the mechanisms that ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack
ALT Screenshot of the header of a published paper: Studies in History and Philosophy of Science Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis Chloé de Canson
As you likely are aware, "American Covid" is knocking about. Remarkably, a small number of journalists seem to have been simultaneously rescued from the carbon monoxide leak that appears to have infiltrated every news office in the country, and are actually reporting on it. /1
Perhaps it's time to remind them of the dangers of COVID denialism, long COVID revisionism and pandering to the general public's childish need to pretend there is no longer any risk. pollypauthor.substack.com/p/…
Polly Patterson retweeted
theguardian.com/commentisfre…
Good article by John Harris about adult social care.
Polly Patterson retweeted
I'm curious... out of the (UK) people who follow me on here with kids approaching Uni age how many of you know what student housing co-ops are? And would you/your kids consider them?
#Students #StudentHousing #University #StudentFinance
0%Am familiar, great idea!
33%Am familiar - no ta...
33%Not familiar, interested
33%Not familiar, no interest
3 votes • 2 daysJust in case you subscribe, sry I’ve had to temporarily hide my YouTube channel, as it's attracted some unwanted offline attention that I don't have the energy for. (dw not abuse from randoms, that comes with the territory—I've not gone soft!) Still here/on Substack. Back soon💚
My latest article investigates what motivates patients to minimise their own illnesses and then amplify this sentiment on behalf of all sufferers. I also explore why are diseases like ME and POTS particularly vulnerable to this type of trivialisation...
Link in first comment!👇
Polly Patterson retweeted
Polly Patterson retweeted
Labour’s inactivity adviser swears at DNS editor after being challenged on safety of young claimants
#AlanMilburn #Lab26 #Safeguarding
disabilitynewsservice.com/la…
Polly Patterson retweeted
💯and the latest wave is already taking people out.
It’s clear we can’t and won’t solve this within our existing systems that are all designed to maintain the status quo.
Im working on building the alternative with a sustainability mandate to act :
protecthumanbiosystems.world
Polly Patterson retweeted
OCD is another nightmare illness that’s treated terribly in the UK. My son has suffered awfully in the past and continues to be disabled by it. Please consider signing.
NICE’s proposed OCD and BDD guidelines are a mess (in fact, the previous guidelines from 2005 were so much better!). Leaving out recommendations for what happens when initial treatment fails is a serious failure for the people who need help most.
OCD Action, OCD-UK, Orchard OCD, The BDD Foundation and Maternal OCD are calling on NICE to include further treatment options in its updated guidelines. Patients need options, and clinicians need clear guidance.
Please sign and share this petition to help ensure nobody is left behind:
change.org/p/treatment-for-o…
