Severe M.E warrior (One of the missing millions). Crohn's disease in remission.
South East, England
Joined September 2016
- Tweets1.3K
- Following2.9K
- Followers1.2K
- Likes16K
Maria-louise Williams retweeted
We have reached the goal of £3.5K for @MEResearchUK !!!! However, please still continue to share if you can!! @MEResearchUK deserves all the money we can raise to help us ME Patients!! 🌟💙
Alice turns 21 on 11th May, her 10th bedridden birthday with #VerySevereME
Two amazing people are running 21km for 21days (only 5 runs left!) to raise £3.5k for @MEResearchUK & show Alice how much she means to them.
They're £40 short! Please read, share & support! Link below! (1)
Maria-louise Williams retweeted
Would any journalists be interested in investigating the allegation of a secret or semi-formal agreement between the Royal Colleges of Medicine and the General Medical Council to not accept complaints from patients with ME or about ME-related medical neglect? 1/2 #MECFS
Maria-louise Williams retweeted
The handling of ME/CFS is clearly one of—if not the—biggest systemic failures in modern medicine. I’m convinced that nothing else even comes close, at least not in the Western world. In no other case is there not only such profound neglect, but also so much active harm inflicted.
Maria-louise Williams retweeted
I can't lay here. i can't sit still. I can't work on anything. They all just make me want to scream. But there's no way out. No door that I can walk through. No path through the wide world beyond that will carry me. Nothing to do but silently scream. #MECFS #LongCovid
Maria-louise Williams retweeted
#MECFS is a debilitating, neurological illness. Severe cases are like torture around the clock: pain, malaise, insomnia, sensitivity to sound, touch, and light. Some believe it’s just fatigue, but that doesn't even come close to describing the reality of ME/CFS. #MEAwarenessHour
Maria-louise Williams retweeted
Thank you all for all your help and support in 2024. It is all much appreciated by us.
We have posted an update on our petition. Please scroll down our petition page to ‘UPDATES’ to read it. chng.it/CGMQTDVvRb
Best wishes to you all for 2025.
Karen Heather & Michael
Maria-louise Williams retweeted
I wish the naysayers—from the simply ignorant to the science-deniers—knew the extraordinary restraint that needs to be utilised on a daily basis with #MECFS.
It’s one of the most insanely difficult things to have a heart and mind that is so willing, yet a body that is so broken.
Maria-louise Williams retweeted
Thank you to @JennyWi04810918 for ordering our leaflets and distributing them at your ME clinic.
Pretty cool seeing Dr Weir holding them! #MECFS #pwME
Maria-louise Williams retweeted
“Over 17,000 participants who donated saliva samples to DecodeME have consented to further analysis and he SequenceME partners will seek to analyse them all.
Subject to funding, SequenceME would be the largest global single-disease ‘long read’ genetics study”
Some news from @actionforme on other platforms. Such a shame they decided not to impart the knowledge to people on X
I don’t know how to link from 🦋 so here’s a screenshot.
Maria-louise Williams retweeted
"Although the cause or causes of M.E. are unknown, the pathophysiology of M.E is not “medically unexplained.” It is available to anyone willing to read the research." ~ Maryann Spurgin, Myalgic Encephalomyelitis Society of America, 2014
paradigmchange.me/me/spurgin…
Maria-louise Williams retweeted
Very severe ME/CFS patient LOSES appeal over sectioning, family says staff now 'abusing' her
Carla has very #SevereME yet West Middlesex Hospital weaponised the Mental Health Act against her.
Now she's lost her appeal against this #MEcfs #SaveCarlasLife:
thecanary.co/uk/analysis/202…
Maria-louise Williams retweeted
Very severe ME/CFS patient LOSES appeal over sectioning, family says staff now 'abusing' her
Carla has very #SevereME yet West Middlesex Hospital weaponised the Mental Health Act against her.
Now she's lost her appeal against this #MEcfs #SaveCarlasLife:
thecanary.co/uk/analysis/202…
Maria-louise Williams retweeted
@WesselyS is Professor 'Cover-Up'. Called in by the Govt to cover up Gulf War Illness, ME/CFS, Covid & now Trans Gender studies. How can he go from saying GWI is due to vaccines, to saying it is all psychological & in the heads of vets. #Corruption
xitter.gq/JU5TICE4VETERAN/status…
I am @WesselyS I believed that vaccines most likely caused the approx 30% of illnesses in 5 Nations of Gulf War 91 troops, until we received funding from governments. I did not carry out the basics of cross section in the other 31+ Nations during 2 studies of epidemiology ⬇️cont
Maria-louise Williams retweeted
#MEHour #MEAwarenessHour
People with M.E. deserve hospitals that understand their needs. @MEFoggyDog has got the ball rolling.
The next steps are ours to make! #PwME #MEcfs
More info and template letter ⬇️⬇️⬇️
✨ People with M.E. deserve hospitals that understand their needs. The M.E.-Friendly Hospital Charter is key to improving care standards. Let’s make it known! #PwME #MEcfs
More info and template letter - buff.ly/4emZwND
Maria-louise Williams retweeted
People should know about ME/CFS, just as MS, Parkinson’s, and diabetes are common knowledge. When ME patients disclose their illness, they are often met with comments such as “I’m also tired”. Patients shouldn’t have to face such ignorance—it’s a severe illness. #MEAwarenessHour
Maria-louise Williams retweeted
💙 M.E. can be invisible, but your care shouldn’t be. Ask your regional health organisation to implement the M.E.-Friendly Hospital Charter for informed, compassionate care.
More info - buff.ly/4emZwND
#MECharter #pwME #MEcfs #MEAwarenessHour
Maria-louise Williams retweeted
It’s #MEawarenesshour. I’m tweeting in the hope that if more people are aware of M.E. and the way it devastates lives, more effort and funding will be allocated to investigating and searching for answers. We need an agreed, objective diagnostic test for detailed clinical trials.
Maria-louise Williams retweeted
ICYMI: Check out the Health Rising interview with Dr. Avindra Nath and Dr. Vicky Whittemore (@NIH_NINDS). They dig into the intramural study, the # MECFS Research Roadmap & the road ahead for the @NIH. ow.ly/Hvcm50U5I7v #MEAwarenessHour #MEAwareness
Maria-louise Williams retweeted
Gastrointestinal symptoms
People with #ME may need help from a #dietitian because of symptoms such as sore throat, pain on eating, abdominal pain, fullness and bloating, constipation, diarrhoea, nausea, and vomiting.
#UKMAW2024 #EndMalnutritioninME #ESPENMAW2024
Maria-louise Williams retweeted
People should know about ME/CFS, just as MS, Parkinson’s, and diabetes are common knowledge. When ME patients disclose their illness, they are often met with comments such as “I’m also tired”. Patients shouldn’t have to face such ignorance—it’s a severe illness. #MEAwarenessHour