Kerry Newnham

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

[Sophie @themupsmuppet]

Help @RobWust bij zijn onderzoek! Vergeleken met spierweefsel doneren is dit een kleine, zelf te bepalen, opoffering ;) #MEcvs #PAIS #NMCB

👇
https://t.co/FkO34mu8IG

[Ramy2.0 @Ramyisback]

Lisa (very severe ME, Germany) can barely be spoken to without crashing. Goal here is to change the caregiver situation and have someone educated explain why forced psych/hospital/rehab is a medical risk. She cannot do the talking herself. Without an advocate she says she will not survive this. Please amplify, especially German community.
#MECFS #pwME #SevereME

[Kerry Newnham @SquashedSiren]

@MEAssociation The survey was diabolical and lengthy, running one month after The ME association severe ME consultation, that appears to have delivered no change. I gave up.

[Kerry Newnham @SquashedSiren]

ME/CFS is another medical scandal requiring justice
https://t.co/Y0YMr0FanK

People bedbound, struggling to eat and on morphine are often left with just an OT as their only so-called specialist and research funding is just £4-8/patient/year (after years of zero) whilst dementia gets £160. These are young and working age people abandoned with zero licenced treatments, sometimes after incurring serious iatrogenic harm. ME/CFS affects 200-300 000, 25% are house or bedbound, with the strong female predominance contributing to decades of dismissal and psychologisation.

The Labour Party must change its decision under Wes Streeting to not commit any resources to its so called ME/CFS “DHSC delivery plan”, which left the many thousands who were left harmed and disabled by the now withdrawn NHS approach of encouraging people with ME to exert (ME is an illness defined by post-exertional malaise and made seriously worse by exertion), with no hope of proper research progress or an upgrade to the medical and supportive care that all other serious chronic conditions receive.

This is a cover up too. The gvt is well aware the NHS based its ME/CFS approach on graded exercise therapy 20-30 years and in 2021 withdrew that because of risk , following so many accounts of harm, yet there’s no formal acknowledgement of harm, the thousands with aquired substantial disability or fitting assistance for the generation harmed

[Kerry Newnham @SquashedSiren]

Re justice, The Labour Party must change its decision under Wes Streeting to not commit any resources to its so called ME/CFS “DHSC delivery plan”, which left the many thousands who were left harmed and disabled by the now withdrawn NHS approach of encouraging people with ME to exert (ME is an illness defined by post-exertional malaise and made seriously worse by exertion), with no hope of proper research progress or an upgrade to the medical and supportive care that all other serious chronic conditions receive.

This is a cover up too. The gvt is well aware the NHS based its ME/CFS approach on graded exercise therapy 20-30 years and in 2021 withdrew that because of risk , following so many accounts of harm, yet there’s no formal acknowledgement of harm, the thousands with aquired substantial disability or fitting assistance for the generation harmed.

People bedbound, struggling to eat and on morphine are often left with just an OT as their only so-called specialist and research funding is just £4-8/patient/year (after years of zero) whilst dementia gets £160. These are young and working age people abandoned with zero licenced treatments, sometimes after incurring serious iatrogenic harm. ME/CFS affects 200-300 000, 25% are house or bedbound, with the strong female predominance contributing to decades of dismissal and psychologisation.

[Kerry Newnham @SquashedSiren]

@mx__worldwide It should be the primary focus. It’s appalling how we have spent years arguing about exercise and the severe just slipping away in beds

[Kerry Newnham @SquashedSiren]

@domdyer70 @LisaOzmelek @DogDeskAction We need campaigns to exert pressure, the whole UK needs to be told. People will alter their travel etc.

[Wayne Hsiung @waynehhsiung]

Imagine living like this for FIVE YEARS. Your entire life. This is what mother pigs endure in factory farms across the globe.

My wife @rose__patterson and her org @AnimalRising released this footage at a supposedly high welfare farm today. This has to stop.

[Kerry Newnham @SquashedSiren]

@AntoineMECFS Clinell do chlorexedine wash cloths too , which are textured and anti microbial, can feet clean quite quick.

[Kerry Newnham @SquashedSiren]

It’s very hard. I am slightly boosted by zopiclone & melatonin which enable tiny personal care but I went years with virtually none (with consequences). Skin irritation and infections are a problem - sores, acne and neck fungal infection etc. Hand sanitisers, mouthwash, extra strong body washes like Hibiscrub or BP. Clinell Chlorhexidine wash mitts for an antiseptic swipe and go. Talc might play a role….AI can provide some good guidance.

[Kerry Newnham @SquashedSiren]

@MEActNet @BatemanHorne @OpenMedF @PlzSolveCFS severe ME is a spectrum. It covers 25% of sufferers whose function ranges from 0-25%. That includes near death right through to totally house bound but largely self caring. It is the 5% that are very severe who are bedbound and in the dark etc.

[Chadwick R. Johr, MD @DrChadJohr]

Not Just Dryness

According to the survey, the symptoms with the greatest negative impact on SjD patient’s lives were fatigue followed by joint pain and brain fog. Of the 20 symptoms reported by ≥ 50% of respondents, more than half were not associated with dryness. SjD is so much more than just dryness. SjD is a serious multi-systemic autoimmune disease. Just about every organ system can be involved, quality of life is frequently poor, and lifespan curtailed. The survey is well worth the read and helpful to share with patients and friends/family of patients who “just don’t get it”:

https://t.co/owbDwmdY0g

The correct answer is e) Joint pain and brain fog. While dry eyes and dry mouth are important symptoms of SjD, the survey identified joint pain and brain fog as having a greater overall impact on patients.

[Kerry Newnham @SquashedSiren]

Re justice, The Labour Party needs to change its decision under Wes Streeting to not commit any resources to its so called ME/CFS “DHSC delivery plan”, which left the many thousands harmed and disabled by the now withdrawn NHS approach of encouraging people with ME to exert (with an illness made seriously worse by exertion), with no hope of reasonable research progress or an upgrade to the medical and supportive care that all other serious chronic conditions receive.

[Its ME Matina @justask]

@sunsopeningband I would like to see MECFS focus more on moderate to serve and harm of exercise need for care and treatment that we desperately need for decades of neglect & suffering and try 2make LC & ME have the same chance at life for funding/treatment at same time#pwme

[Kerry Newnham @SquashedSiren]

@RightToLifeUK @WAlladin1 The people who request death because of advanced motor neurone or Multiple Sclerosis or Myalgic Encephalomyelitis are not magically saved, or returning to th workplace, via good social care. Ditto end stage cancer, who this is currently about?

[Kerry Newnham @SquashedSiren]

@MEAssociation @TomKindlon Caroline. Lucas wrote an excellent letter back in 2018? It’s questionable whether a letter from one person, not the APPG , with no supporting campaign can change anything more than what’s given before with the urgency required.

[Mike Hudema @MikeHudema]

"The fossil fuel industry continues to pocket massive profits and subsidies.

Meanwhile, everyday people bear the costs of climate catastrophe – from rising insurance premiums to lost livelihoods.

Those who shoulder the blame must foot the bill." @antonioguterres

#ActOnClimate

[Chris Alvino @ChrisAlvino]

Energy is the currency of life.

Long COVID and ME/CFS are so brutal bc they can make you too poor to afford your own life.

A shower. A meal. A conversation. Work. Seeing someone you love.

Everything costs energy...

And sometimes you simply don't have enough to live.

[Kerry Newnham @SquashedSiren]

And yet when they deny ME/CFS any funding from the main nih budget, as key NIH figures , former director +Vicky Whittmore , have done post ‘20 , they say the ME/CFS community should look to long covid research for hope. Especially for severe ME, it has looked a very indirect, ineffective, inefficient poor substitute for dedicated #mecfs research in a long covid-first strategy which ,Afaics , The main US charities have facilitated and embed themselves in.

[Naomi Harvey “PhD Witch” #WearAMask @Naomi_D_Harvey]

@JackHadfield14 The fact is, only a tiny percentage of research papers on long covid even *mention* ME.

It’s literally minuscule!

Even papers which discuss things found first in ME tend to ignore that ME research exists.