Sowieso #severemecfs

Samariterbund hat mir besser geschmeckt. Ich bestelle immer Wochenpaket mit Suppen. Ist mein Notfalls Essen für schlechte Tage #severeMECFS

Leider nein #severemecfs

This is my local hospital. I too have #SevereMecfs, and this is absolutely terrifying. These are the people we're supposed to go to when we need help - doesn't even have to be something #mecfs related - what if we need surgery, have a heart attack, get cancer? This is what happens to us.

Dann wieder im nächsten Leben #severemecfs

"Our study joins a growing body of work by scholars and patient advocates calling for recognition, respect, and reinvestment in the lives of those with severe ME/CFS These individuals are not invisible by choice; they are rendered invisible by systems that refuse to acknowledge their existence and suffering. Listening to their voices is a moral imperative, a research necessity, and a first step toward justice." RESEARCH UK INFORM. INFLUENCE. INVEST. SCO36942 Nezamdoust and Ruel. Social Science & Medicine (2026)

ME Research UK:

A team of researchers have published a study investigating lived experiences of people with ME/CFS using data from posts made on social media.

Read more: tinyurl.com/mj2p8c24

#mecfs #cfs #pwme #severeme #severemecfs

BBC Wales Our son loved the outdoors – invisible illness means he now can't walk or talk The article includes several people with ME/CFS in Wales where NHS services are patchy. The Welsh Government is quoted: "Proposals for an all‑Wales specialist, an expert group and national standards are being actively considered as part of the service's ongoing development." Dr Charles Shepherd and several people with ME/CFS took part in a BBC Radio Wales phone-in. Duration 26 minutes.

BBC Wales covers ME/CFS with text and radio pieces

www.bbc.com/news/article...

www.youtube.com/watch?v=r1S2...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #SevereME #SevereMECFS

Istg they just want those of us with #SevereMecfs to die alone at home and put the silly notion of inconveniencing the #NHS by having any healthcare needs met behind us, permanently.

#mecfs

--- Christian Zacharias ---
#MECFS #SevereMECFS

Für alle, die sich fragen, ob es Christian Zacharias gut geht: Nein, es geht ihm leider gar nicht gut. Er hat sich in den letzten Monaten sehr stark verschlechtert und ist jetzt schwer betroffen. (1/5)

There's never anything for #SevereMecfs

The government tells us that PIP and other disability benefits provision will be dependent on an NHS consultant/specialist report.

There are none.

#mecfs

I feel so lucky, having that AND #SevereMecfs, for which not one NHS consultant even exists.

I'm actively scared of going into an NHS hospital with #mecfs #pwme #SevereMecfs

Is it just me?

UK #ThereForME co-founder Karen Hargrave writes about applying for Continuing Healthcare funding “For over a year now I’ve been struggling to secure NHS Continuing Healthcare (CHC) funding for my husband James. It’s been a gruelling process, emblematic of the many challenges people with ME face accessing support and ultimately getting the condition taken seriously by the NHS. Today I’m sharing our story, and why I think this is an issue that deserves decision-makers’ attention.”

(UK)
@thereforme.bsky.social co-founder @karenlhargrave.bsky.social writes about applying for Continuing Healthcare funding

www.thereforme.uk/p/why-is-con...

Screenshot from latest Science for ME weekly update

#SevereME #SevereMECFS #VerySevereME
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis

Please repost and quote post this, comment on this post, not just like this post! ⬇️ It helps boost engagement

I have #SevereME #SevereMECFS so I don’t have the ability to heavily promote my fundraiser especially with worsening symptoms and little daily support so it’s only me managing it all

This is the worry. ADHD isn't the only condition the NHS has absolutely zero diagnostic or ongoing care provision for. I have #SevereMecfs. They have ZERO care, specialists or support available, or planned for us, too. So when it's #PIP review time what do we do?

STONEBIRD : After much thought, Linda and I have decided not to sell my Carer books anymore. Instead I am making them available as a free download on Stonebird. If you do download the books and they help, please do let us know. Each book took massive time and effort to create, with contributions to two of the books from very ill people around the world. All of them were written with immense care to convey the complexity and skill of being with someone who is extremely, unimaginably ill. The books are : NOTES FOR CARERS : I wanted to make a beautiful, easily accessible, informative guide, it includes contributions from Kara Jane Spencer and Merryn Croft, much loved and much missed. MORE NOTES FOR CARERS : This is our most comprehensive, in-depth guide. CARE FOR ME: This pocketbook guide sets out to gently and tenderly show how you can grow and learn as a carer and look after yourself too. Please see Stonebird for more information. With love and respect to all who struggle to get the right care and understanding. Greg and Linda xxx https://stonebird.co.uk/

Stonebird books on severe ME and caring now available to download for free

Screenshot from Stonebird Facebook page (of Greg & Linda Crowhurst)

stonebird.co.uk

#MyalgicEncephalomyelitis #SevereME #SevereMECFS
#SevereCFS #VerySevereME #PwME

If any other #SevereME #SevereMECFS patients can boost this (or mild or moderate folks help a Severe me out), thank you 🙏🏼

Tja, ich muss mich leider mit PEM rumschlagen und einschätzen, ob jetzt ein Kaffee drinnen ist #severeMECFS

Many of those we care for are sound sensitive which means that sound proofing or minimizing sounds is important. Audimute.com sells sound proofing materials (https://www.audimute.com/?srsltid=AfmBOoroq-oztCCyDsWYuOfTj0brxVBYOTicWgLq0x0-AfSMtfxwM4Wa ) and a call participant who uses them is well satisfied with them. https://www.amazon.com/stores/Audimute/page/A4D2379B-B4AD-4700-A085-096A2AF15C1F

A source for soundproofing material. From a report on a carers' group meeting

Links
www.audimute.com?srsltid=AfmB...

www.amazon.com/stores/Audim...

COI:I have no financial or other interest in these companies

#SoundSensitivity #NoiseSensitivity #MEcfs #CFS #PwME #SevereME #SevereMECFS #LongCovid

Ich sag oft: Es geht. Und Ihnen? #severemecfs

Ja das wäre schön, aber vermutlich werde ich den Wald nie wieder sehen #severemecfs

3/

"In this article, we have used the case of a woman with life-threatening malnutrition as a consequence of a number of diseases, including severe ME/CFS, to illustrate and discuss the problems this disease can cause and the impact it can have."

#SevereME #MEcfs #CFS #PwME #SevereMECFS

Anna is severely affected by ME/CFS and other illnesses and urgently needs help to escape domestic violence

👉 Please donate, share, or offer direct help now!

#MEcfs #severeMEcfs

Key messages: ● ME/CFS can be more disabling than many other diseases, yet there is no effective treatment; ● The most severely affected are bedbound 24/7, lying in dark and quiet rooms because of severe hypersensitivity to light and sound; ● ME/CFS can lead to life-threatening malnutrition requiring (par)enteral tube-feeding; ● ME/CFS’ main characteristic, called PEM, is an exacerbation of symptoms after trivial mental or physical exertion with a temporary loss of function and an abnormally de-layed recovery; ● Two-day cardiopulmonary exercise testing can provide objective proof for the abnor-mal response to exercise but can cause severe relapses, and the most severely ill are too ill to do this.

2/
Extract from new paper:
An Overview of Severe Myalgic Encephalomyelitis

Free fulltext:
www.mdpi.com/2077-0383/15...

#SevereMECFS #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Abstract In this article, we have reviewed the literature on severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a clinical diagnosis in the absence of a diagnostic test. However, in research settings and disability disputes, 2-day cardiopulmonary exercise testing can be used to diagnose and document the abnormal response to exercise. Biomedical research into this disease has been scarce and underfunded for decades. Consequently, there are no effective treatments. In its most severe form, it is more disabling than many other diseases, and patients are bedbound 24/7, dependent on carers, and spend their days in dark and quiet rooms. Even the soft sound of a human voice can lead to further deterioration. Some of the very severely ill suffer from life-threatening malnutrition and need to be tube-fed. The COVID-19 pandemic has led to a sharp increase in the number of patients with post-infectious diseases, and many of them fulfill ME/CFS criteria. Dedicated, focused research using advanced medical technologies is needed to gain further understanding of the underlying disease mechanism. This will enable us to find effective pharmacological treatments and address the unmet medical needs of these very ill people.

Great to have this new review for a relatively neglected area in the research literature

An Overview of Severe Myalgic Encephalomyelitis

Free fulltext:
www.mdpi.com/2077-0383/15...

#MyalgicEncephalomyelitis #SevereME #MEcfs #CFS #PwME #ChronicFatigueSyndrome #SevereMECFS

Also wenn die Steirerin sich mit dem Gürtel des Cobra Mannes selbst erwürgt und sich dann selbst begraben hat, werde ich es doch noch schaffen, mich selbst zu pflegen und mich danach selbst zu begraben #severemecfs

This! Vor allem wenn man schwer krank ist #severemecfs

Frag mich die ganze Zeit, wo ich einen Diener herbekomme. Mir geht’s auch wie Mrs. Sophie #severeMECFS

Wenn man sowieso immer im Dunkeln liegen muss, ist das auch ok #severemecfs