Tube-fed, bedbound, a very severe M.E veteran, injured in this battle. Unlikely to come through intact or alive. UK harmed pwME & then neglected us. LW-green
Joined December 2010
- Tweets22.3K
- Following1.4K
- Followers1.5K
- Likes41K
Kerry Newnham retweeted
Kevin Maguire is spot on, all this talk about people stocking up is part of a wider lobbying campaign to increase defence spending. And as Kevin points out, the UK is already the 6th biggest defence spender in the world.
Kerry Newnham retweeted
Inspired by the amazing Beth Dobbin and the woeful uptake of ME/CFS training by healthcare professionals in the NHS, I've been working on trying to consolidate everything policymakers and open-minded healthcare professionals need to know into a five-minute video.
If you think it's of use, please feel free to share it with whomever. 💚
Please remember, I'm bedbound and using my very limited spoons on paced advocacy work instead of hobbies I can no longer do, because I passionately believe in change for all of us. Grace and constructive engagement are always appreciated. 💚
#MEcfs #LongCovid #FND #MyalgicEncephalomyelitis #NHS #PublicHealth #MEawareness
Kerry Newnham retweeted
Brian May resigned from the RSPCA, the organisation created specifically to protect animals from cruelty, because he no longer believed it was doing enough to prevent that cruelty. His decision, announced on Instagram, quickly turned into something much bigger. Ricky Gervais and Joanna Lumley joined other celebrities in calling for change, more than 60 animal protection organisations signed a petition, the RSPCA opened an internal investigation, and its own Chief Executive eventually announced that he would step down.
May had served as a Vice President of the RSPCA since 2012. For twelve years he had raised money and campaigned for animal welfare. But in September 2024 he learned what had been happening on some farms carrying the RSPCA Assured label. Investigations had uncovered overcrowding, poor hygiene, and cases of physical abuse on more than 40 certified farms. Major supermarkets were signed up to the scheme, so customers could see the RSPCA label and believe they were paying extra for higher standards.
May gave the organisation time to respond. In the end he felt the response was completely inadequate. On September 26, 2024, he posted his resignation letter on Instagram. “It is with profound sadness and not without massive soul-searching that today I have to offer my resignation as a vice-president of the RSPCA. Good folks out there are still paying extra for animal produce with the RSPCA sticker on it — thinking they are protecting farm animals from cruelty. In the end there was no other option for me.”
The following day Bryan Adams, Moby, Ricky Gervais, Joanna Lumley and others signed an open letter urging the RSPCA to abandon the scheme. More than 60 animal protection organisations signed it. The RSPCA launched an internal review and its Chief Executive announced he would step down by the end of the year.
Brian May walked away from the animal protection organisation he had supported for twelve years because he believed it was not providing enough protection to animals. And somehow there may be no decision more perfectly Brian May than that.
Kerry Newnham retweeted
Britain had about 30 million hedgehogs in the 1950s; we've got under 875,000 today. The population has dropped by about 97%. Shocking.
Kerry Newnham retweeted
Denmark to ban mink farming in government U-turn bbc.in/3WqmkbU
Kerry Newnham retweeted
Over 24,000 of you demanded the Health Secretary fixes NHS continuing healthcare. This week we handed in this petition to the Department of Health.
Continuing healthcare funding is a lifeline for people with long-term complex health needs and it needs to be fixed.
ALT A group of people stands near Big Ben, holding signs advocating for Parkinson's and dementia care. Some signs read, "I support better care for people with Parkinson's" and "No one should face dementia alone." The group appears engaged and supportive.
Kerry Newnham retweeted
The CQC’s State of Care report doesn't tell people with Parkinson's anything they didn't already know.
The UK government has promised change. It is time to deliver it.
ALT Text image featuring the message: "The CQC’s State of Care report. What does it mean for people with Parkinson’s?" with a downward arrow in the bottom right corner on a beige background.
ALT Text reads: "The report confirms what the Parkinson’s community has known for years: the adult social care system is fundamentally broken." There is a dark circle in the bottom right corner with an arrow pointing right.
ALT Text on a plain background reads: "Over half of care staff lack relevant qualifications. There are systemic delays in assessments. Unpaid carers are taking the brunt of these failures. Families are financially penalised for having a complex condition that gets worse over time."
Kerry Newnham retweeted
Expertengruppe befasst sich mit Long-Covid und #MECFS
bundestag.de/presse/hib/kurz…
Kerry Newnham retweeted
Multi-arm trials, like EJS ACT-PD which we’re co-funding, could help accelerate treatment research. But recruiting patients into these exciting studies still takes longer than it should.
We need faster approvals and an NHS ready to deliver new treatments.
Kerry Newnham retweeted
A pretty generic, non-commital response to @BethDobbin letter to @andyburnham
A key problem of the Delivery Plan (which doesn't deliver) is that it's used as policy theatre to ensure change doesn't happen on the scale that is needed. 1/4
ALT Screenshot of a statement from a Department of Health and Social Care spokesperson responding to concerns about ME. The spokesperson acknowledges the devastating impact of ME and says the government is committed to accelerating research and treatment. The statement highlights genetic research, a clinical trial investigating potential treatments, and the government’s ME/CFS Delivery Plan, which it says it remains committed to implementing.
BBC Coverage of @BethDobbin letter to @andyburnham ! Thank you @KatieFalkingham
The BBC have asked @10DowningStreet for comment.
Note: Commonwealth diver Archie Goodburn received a swift & very positive response for brain cancer:
👉 National lead
👉 Immediate expert review
👉 A national action plan
👉 Faster regulatory reform
👉 National conference
👉 Improved clinical trial access
Can ME & Long Covid diseases that predominantly affect women & NO NHS care for the severe expect a response that meets the need?!
🖇️👇
ALT Screenshot of a BBC Sport article headlined “Olympian Dobbin writes to Prime Minister over ME funding.” The article features a video interview with British Olympic sprinter Beth Dobbin, who developed severe ME following Covid-19 and glandular fever infections. The video thumbnail shows Beth seated indoors, wearing a pale blue sweatshirt. A caption beneath the video quotes Beth: “It feels like you're days away from death.”
Kerry Newnham retweeted
A new kind of clinical trial is under way which could speed up the search for drugs for people with Alzheimer’s.
Professor Paresh Malhotra at Imperial says he’ll assess the impact of repurposed medicines on ‘people’s thinking and the way they carry out daily activities’.
Kerry Newnham retweeted
🚨 My new paper on small fiber #neuropathy in NONPAINFUL conditions is published. Neuropathy is traditionally defined by neuropathic (tingling, numbness, burning, shooting) pain, but there are neurologic and non-neurologic conditions where objective findings of small fiber neuropathy are highly prevalent despite the pain being absent or minimal. I outline comprehensive treatment options for small fiber neuropathy with both evidence-based and emerging therapies in the Table. 🧠
clinmedres.org/content/24/3/…
Kerry Newnham retweeted
Primodos families were a key part of the #FirstDoNoHarm report into 3 women's health harms - yet were left out of financial redress talks.
It's time to compensate #primodos #mesh and #valproate families
Kerry Newnham retweeted
Thanks so much @BethDobbin for all your efforts to raise awareness of ME & it’s impact on patients & their families.
Would be great (& long overdue) if @andyburnham is the Prime Minister to help bring real change for us all.
Hundreds of thousands of people are waiting….
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️
Thanks to @ThereForME_UK and @wecrunchme for the stats.
Kerry Newnham retweeted
‘The more Kev’s we have in this country the better’
Prince William on Sir Kevin Sinfield who has raised more than £13m for MND.
Watch ‘Thank You Sir Kev’ - @BBCOne at 8pm on Monday 26th October and on @BBCiPlayer
bbc.co.uk/iplayer/guide/bbco…
Kerry Newnham retweeted
Andy Burnham has said he will work to 'get justice' for the victims of the Primodos scandal.
Burnham paid tribute to campaigners, who have suffered harm due to the pregnancy test drug that was used between the 1950s and 1970s.
Sky's @JasonFarrellSky reports ⬇️
Kerry Newnham retweeted
I cannot believe this. The 2024 NHS pandemic plan states the following generic assumptions:
“it will not be possible to halt the spread of a new pandemic virus, and it would be a waste of public health resources and capacity to attempt to do so.”
england.nhs.uk/long-read/fra…
Kerry Newnham retweeted
35 years and still no help for our gulf war veterans 💉💊⛽️☁️☠️
🇬🇧🇬🇧🇬🇧🇬🇧🇬🇧🇬🇧🇬🇧🇬🇧🇬🇧🇬🇧🇬🇧🇬🇧
#lestweforget
#gulfwarsyndrome
#gulfwarillness
#veteransuicides
