2022 is year 25 of being 90-95% bedbound in a darkened room with ME. I finally accessed medical treatment for POTS in 2020, 22 years after becoming ill.
Joined September 2021
- Tweets6.3K
- Following146
- Followers107
- Likes11K
CoolerKing retweeted
#NoToAD
#VoteNo
What happens when the doctor judging your quality of life can also raise Assisted Dying
What happens when the doctor judging your quality of life can also raise assisted suicide?
Disabled people already experience damaging judgements in healthcare.
Every MP matters on 11 Sept. Ask yours to vote NO:
action.notdeadyetuk.org/
3/4 #AssistedSuicide #AssistedDying
CoolerKing retweeted
A German petition states people with ME/CFS should not be obliged to undergo rehabilitation against their will.Refusal or non-participation in rehabilitation must not lead to disadvantages under social law. It has been signed more than 3000 times & has a 30000-signature target
1/
CoolerKing retweeted
1) Honored to be interviewed by @davidtuller1 about my royal honor.
#pwme #myalgicE #millionsmissing
"The response from within the medical and scientific community has been overwhelmingly positive as well. Of course, scientists from the “BPS” CBT/GET
virology.ws/2026/09/06/trial…
CoolerKing retweeted
Norwegen 🇳🇴: 98 % Prozent mehr Arztkonsultationen wegen Gedächtnisproblemen, als vor der Pandemie erwartet worden war, bei Konzentrationsstörungen liegt der Wert um 150 % höher
Daten des Norwegischen Instituts für öffentliche Gesundheit (FHI) zeigen, »dass wir in diesem Jahr …
ALT Entwickeling der Anzahl von Arzkonsultationen in Norwegen wegen Gedächtnisproblemen und Konzentrationsstörungen 2010-2026 Die Grafik basiert auf Statistiken aus der Forschungsarbeit des Einreichers, doch die Zahlen wurden seit dem ursprünglichen Artikel aus dem Jahr 2026 aktualisiert. Richard Aubrey White
CoolerKing retweeted
#NoToAD
#voteNo
📢Join @Dis_PPL_Protest & allies for a Vigil against Assisted Dying Bill
📢Friday 11th September 2026
📢8.30am
📢Parliament Square London
📢⬇️Spread the word
ALT Join the vigil. Parliament Square, 11 September. Assemble 8.30am, starts 9.30am. Bring placards, water, hat, sunscreen, chairs, phone power bank and charging equipment. DPAC Campaign Toolkit. #NoToAD #VoteNo
CoolerKing retweeted
Life as a Disabled person is expensive. That is not the fault of us, but a system that has in-built barriers that cost us more.
The benefits system must reflect this, instead of being another barrier in our lives.
Our Head of Policy, Fazilet Hadi, writes for The BMJ 📝
PIP payments have failed to keep up with the increasing costs of disability and the system has a culture of disbelief at its core, says Fazilet Hadi @DisRightsUK.
The government’s review seems unlikely to change this
bmj.com/content/394/bmj-2026…
CoolerKing retweeted
It rained....
And as predicted on @LBC with @HenryRiley1 not 48 hours ago.
Anything in brown is sewage being dumping into the environment right now, in real time, anything in red is sewage dumped over the last 24 hours.
CoolerKing retweeted
🛑🚨 END THE ADAPTATIONS DEADLOCK📢 Tenants are trapped in unsuitable homes because #privatisation cut the grant to 50% causing Housing Assocs to deny vital wet rooms, shower pumps & ramps. We need to fight back & demand a return to the original process!
✍️change.org/Restoration_of_Th…
CoolerKing retweeted
Assistierter Suizid wegen ME/CFS
„Kathis Tod soll nicht umsonst gewesen sein“ - Charity-Event in Köln
Enge Freundinnen der Kölnerin, die mit 30 verstarb, kämpfen nun für mehr Forschung im Bereich der bisher unheilbaren Krankheit.
ksta.de/koeln/me-cfs-kathi-w…
CoolerKing retweeted
“I can't think of many other diseases where the more severe your symptoms are the worse your care is”
Karen Hargrave on caring for her husband James, who developed very severe ME following COVID. #MECFS #LongCovid
CoolerKing retweeted
Congratulations to @AnilvanderZee for his well-deserved Knight of the Order of Orange-Nassau award for his #PAIS voluntary work (for ME/CFS, Long Covid, QVFS, etc)👏
All the more remarkable given the extreme circumstances he has to deal with
translate.google.com/transla…
#MEcfs
ALT Photo of Anil lying in bed NOS News • Today, 14:37 Physically disabled but important source of knowledge, ribbon for ME patient Anil van der Zee Share this article Sander Zurhake editor Healthcare Physically almost unable to do anything anymore due to the chronic and extreme exhaustion disease ME, but still change the world of many fellow sufferers for the better. It sounds impossible, but Anil van der Zee has been doing it for years. For this he was appointed Knight in the Order of Orange-Nassau today. He received the knighthood from the hands of the Amsterdam mayor Halsema.
CoolerKing retweeted
Rowland Manthorpe on how his #LongCovid looks almost identical to Dr Charles Shepherd's ME, & how in 2022, 40 years apart, we knew almost nothing about these diseases. Shepherd argues that if #MECFS had been funded similar to rheumatoid arthritis, treatments could already exist.
CoolerKing retweeted
“ME/CFS patients are similar to a critically ill patient 24 hours before they die, except they live like that for years and years.”
Dr. Ron Davis, Stanford University
#severemecfsday
CoolerKing retweeted
1) Post‑exertional malaise
Orthostatic intolerance
Poisoned
Oxygen deprived
Food intolerances
Light and sound intolerance
Energy impairment
No music,
No video
No moving objects on screens
Darkness
Ignored
Forgotten
Expendable
Isolation
CoolerKing retweeted
Content warning
Today is #SevereMEDay the birthday of Sophia Mirza.
Sophia was wrongfully sectioned for refusing to attend a clinic that treated patients with Graded Exercise Therapy. The mistreatment during her stay resulted in a dramatic deterioration and she later died.
CoolerKing retweeted
Forward ME has published proposals for urgent improvements to the care of people with very severe #MECFS. It highlights two Prevention of Future Deaths reports and that the delays to do not remove the need to address immediate patient safety risks.
#SevereMEAwarenessWeek
CoolerKing retweeted
The myth that PIP is handed out easily ignores thousands of us disabled people who are denied first time and forced to appeal.
A system that requires tribunals to correct mistakes is not a system that is easy to access.
#DisabilityJustice
CoolerKing retweeted
Forward ME Briefing Paper on Clinical assessment of people with very severe ME/CFS
This was prepared by Dr Charles Shepherd for the DHSC and NHS England to explore the creation of a national specialist referral service for people with very severe ME/CFS who require hospital admission.
forward-me.co.uk/fme-briefin…
#MECFS #SevereME #pwME #DHSC #DeliveryPlan
CoolerKing retweeted
"Covid has just ruined my life and the lives of so many other children"
Samir, 16, has seen little improvement 5 yrs after developing #LongCovid. He is still disabled, housebound, and wheelchair-bound. The only medical help has been private because there was nothing on the NHS.