Lmst

Welsh Parliament: A Senned debate on severe and very severe ME/CFS planned for this week has been postponed to 26th November

https://record.assembly.wales/Motion/8884

Screenshot from latest Science for ME weekly update

#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

UK Welsh Parliament A Senned debate on severe and very severe ME/CFS planned for this week has been postponed to 26th November. The proposal asks the government to "respond to the concerns raised in the Coroner in England’s Prevention of Future Deaths Report, and explain what practical steps they will take to ensure that no patient in Wales will ever be placed in such tragic circumstances as those described in the report".

The Shower

https://meglobalchronicle.wordpress.com/2024/12/17/the-shower/

On a person with ME who needs help showering and doesn't like it

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME @mecfs

The Shower
Gepubliceerd op 17 december 2024
In my previous life, before ME struck mercilessly, showering was part of my daily morning ritual. Now that ME has very successfully completed its mission , daily showering has been reduced to once a month and sometimes once every three weeks if I am lucky.

The ‘new showering’ requires quite a bit of preparation. On the day itself, when I feel I can do it, the first thing that has to be done is to put the shower chair in the right position with leg supports up and the backsuppert a bit back. After that, all the requirements are collected and then I need to waiti before actually shower. Usually that’s not until late in the evening.

I can soap and rinse myself to a limited extent but with everything else I need help from my husband. He washes my hair, helps with all the tasks at hand, dries me off, oils me up and helps me get dressed so that I can quickly get back into my bed to inhale my nice smell. Which, by the way, doesn’t last very long.

Just as I used to enjoy a shower I now dread it, and not just because of the PEM afterwards.

New post on my dog's patreon!

Helping My Huemon When They're Extra Unwell - https://www.patreon.com/posts/helping-my-when-141332123

#MEcfs #severeME #chronicIllness #doggyverse #werewolfWednesday #werewolfDog #patreon #dogs #snapshot #dogBlog

Image card of post, showing a blurred photo of a red malamute laying down under my hammock. It has the words "Helping my Huemon When They're Extra Unwell" and "Wicked Flare the Malamute" plus the link to the patreon, patreon.com/wickedflare

ME Research UK:

A team of researchers have published a paper assessing the effectiveness of the care provided for people with severe or very severe ME/CFS at a specialist clinic in Norway.

Read more about what the team found here: https://tinyurl.com/2ftvrar5

#mecfs #PwME #severeme #cfs @mecfs

Specialised care for people with severe or very severe ME/CFS Researchers have published a paper relating to the outcomes of a specialist clinic in Norway for people with severe or very severe ME/CFS. Care is based on the 2021 NICE guidelines. A 'four-step supportive therapy programme' also offered: 1. High dose thiamine and oral rehydration solution 2. Nicotinamide adenine dinucleotide and hydrogen, Coenzyme Q10, and vitamin B12. 3. Low-dose Naltrexone. 4. Low-dose aripiprazole. 24 (17 very severe, 7 severe) No change Some improvement Significant i ---0 7 (29%) improvement —0 5 (21%) ► 12 (50%) 12 (50%) 50% improved and 50% experienced no change. Despite these observations, more research is required. Saugstad et al., Fatigue: Biomedicine, Health & Behavior (2025) 6114 INFORM. INFLUENCE. INVEST. RESEARCH UK SCO36942

Upcoming debate (this Wednesday) in the Welsh parliament on ME particularly severe ME and long Covid

https://record.assembly.wales/Motion/8884

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @mecfs @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

NDM8884 - Member Debates
Tabled on 24/04/2025 | For debate on 15/10/2025
To propose that the Senedd:

1. Notes that myalgic encephalomyelitis (ME) is a chronic and disabling illness at all levels of severity.

2. Notes that of those suffering from ME, 25 per cent are categorised by NICE as 'severe: mainly bed bound or housebound', and 'very severe: fully bedbound', requiring full-time care and, in the severest cases, palliative care and tube feeding.

3. Regrets that it is often those with the greatest severity levels of ME who are provided with the least amount of appropriate care and treatment.

4. Calls on the Welsh Government to:

a) respond to the concerns raised in the Coroner in England’s Prevention of Future Deaths Report, and explain what practical steps they will take to ensure that no patient in Wales will ever be placed in such tragic circumstances as those described in the report;

b) ensure that the Adferiad-funded ME services are making provision appropriate to the needs of patients with severe and very severe ME;

c) bring together an expert group of health professionals and people with lived experience, at a national level, to develop all-Wales guidance and quality standards on ME, including for the most severely affected;

d) make the appointment of an all-Wales specialist consultant for post-infectious chronic conditions - including ME and long COVID - a priority;

"I still desperately want to live"
A woman who is turning 30 who has spent the last decade living with severe ME reflects on her life

https://meglobalchronicle.wordpress.com/2023/12/23/i-still-desperately-want-to-live/

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs

I still desperately want to live
Gepubliceerd op 23 december 2023
One of my favourite films is 13 Going On 30 (honestly, it’s mostly for Mark Ruffalo) and lately I’ve been thinking a lot about Jennifer Garner’s character Jenna chanting “thirty and flirty and thriving” at 13 in her parents basement; then I try to remember all the things I said to myself about what my life might look like at 30 when I was just 13.

I wanted to be a forensic psychologist and a vet and a mechanic and a midwife and an ecologist and an infant school teacher and a counsellor and a forensic pathologist (until I realised dead bodies of any species freak me out). I never could decide what I wanted my life to look like when I grew up but I knew I wanted to do so much.

I turn 30 next month and I have spent the last decade living with Severe M.E. There have been months of time within that when I would have been classed as having Very Severe M.E and periods of time when I would have been more towards being Moderate-Severe. There have been times when I have felt desolate and times when I have felt so much joy. There has been great loneliness and there has been the love of community. There have been times when I did not know if I’d live to see my 30s and times when I had unbelievable amounts of hope that things would get better. I have survived it all.

From: ANZMES

#SevereME #PostExertionalMalaise
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @mecfs

Understanding Post-Exertional Malaise (PEM)
is non-negotiable.
Minimal exertion
ME
ANZMES
can trigger it.
Such as:
Exposure to light.
Being touched. Answering a question.
#SEVEREMEDAY

Es más fácil encontrar una peluquera que vaya a casa a cortarte el pelo que un fisioterapeuta a domicilio.

#salud #dependencia #discapacidad #paciente #pacientes #crónicos
#PacientesEncamados
#fisioterapia #fisioterapeuta
#SanidadPublica #SanidadPrivada #EncefalomielitisMiálgica #EncefalomielitisMialgicaSevera
#severeME #bedridden #homebound #patient #patients #pwME
#myalgicencephalomyelitis
#peluqueria #peluquera #curly #curlyhair

An article on why being ill with ME, particularly severe ME, is psychologically challenging

https://meglobalchronicle.wordpress.com/2022/09/25/life-between-hope-and-fear/

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

thought scramble
Gepubliceerd op 25 september 2022
This disease chases you day and night. It keeps you awake at night and when you eventually fall asleep it follows you into your dreams. There is no escape.

Being bedridden with severe ME/CFS also means that you have a lot of time. Although time is the most valuable currency in the world and I have much of it, it is useless.

Finding distractions is hard. Then you just lie there alone with your thoughts. It’s like being in a lockdown. Not in the house or in the room but in your body. Only you and your thoughts. Nothing else. They are always there. Not to think is not possible. If the body doesn’t function any more, you are left alone with your thoughts. You might have suppressed them in the past but that’s not possible anymore. You can’t go out to clear your mind or distract yourself with sports or partying. You must face them. With them comes fear. Fear about the future.

"Life between hope and fear": ME Centraal, a Dutch ME-infochannel, asked their regular columnists to write an article on severe ME

https://meglobalchronicle.wordpress.com/2022/09/25/life-between-hope-and-fear/

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

ME Centraal, a Dutch ME-infochannel, asked their regular columnists to write an article on severe ME, to be published on or around 8 August, Severe ME-day. Marieke Suur, a patient with severe ME, wrote the following.

Writing an article about severe ME is not that easy, because how can I express in a few sentences what this life means to me?

The weird thing is that since I was diagnosed with ME early in 2020, I went from moderate to severe ME within a month (that’s what happens when you miss the last step of a flight of stairs and have to undergo two operations and ‘rehabilitate’ for six months). I was relieved with this clear diagnosis after years of searching, but this relief soon turned into despair.

3/

"As I once wrote to a friend: 'At times I’ve felt myself suspended between elation at discovering a simple pleasure, and despair at the reminder of just how much normality has been denied me.'”

#SevereME #MEcfs @mecfs

🧵
"Glimpsing the World: My Joy and Pain" (2019) by Naomi Whittingham, who has had #severeME for decades

https://alifehidden.com/2019/07/26/glimpsing-the-world-my-joy-and-pain/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

1/

Glimpsing the World: My Joy and Pain
Posted on 26th July 2019by Naomi Whittingham
A rocky shoreline, with waves gently breaking on wet sandThere is an indescribable joy in experiencing the outside world after many months or years of incarceration. The dance of sunlight through the leaves of trees; the flicker of shadows on grass; the touch of a gentle breeze. When darkness and isolation have been the foundation of life, these simple experiences are cherished. There can even be beauty in less obvious places: I have felt wonder on seeing things like traffic lights and motorway signs. To the housebound eye, these sights are the pulse of a living, active world. As such, my heart seizes them.

"New Year, Trashing of Old Years … and Sheep’s Bum Holes" by a mother with #severeME

https://meglobalchronicle.wordpress.com/2025/01/24/new-year-trashing-of-old-years-and-sheeps-bum-holes/

One description I saw:
"a raw unfiltered commentary of feelings at another year gone by, however, acknowledgement we can’t know joy unless we know suffering"

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

New Year, Trashing of Old Years … and Sheep’s Bum Holes
Gepubliceerd op 24 Januari 2025
Trashing 2024

So there I was, merrily scrolling through Facebook on NYE enjoying people’s recaps about how their year had been, when I noticed a few posts about how ‘2024 can just do one’ (fuck off in other words) and ‘Bring on 2025!’

It’s nothing new. I see the same tossing of the old year out with the trash every NYE with statements about how rubbish it was, laced with bravado and hope for the year ahead. And I get it, I really do. Those who know me know I am no stranger to life dealing me some pretty shitty hands. (As in circumstances. I like to think my actual hands are quite nice. Ten fingers and all).

"On an adventure with my little son".

Touching article where a woman with severe ME describes the precious time she spends with her young son:

https://meglobalchronicle.wordpress.com/2024/03/29/on-an-adventure-with-my-little-son/

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

1/

On an adventure with my little son
Gepubliceerd op 29 maart 2024
The pain I feel at being able to spend so few moments with my eight-year-old son is almost impossible to express in words. Fortunately, the happiness of those brief moments when I actually see him is so great that it makes me feel complete for a while.

He has just left. What a great time we had. Some adjusting in the beginning, because going from the busy world to mummy’s dark room where we have to whisper and play carefully on the bed is a big transition. But we always find our way.

text continues below photo

3/

"We have described a specialised care programme for severely and very severely affected ME/CFS patients. Approximately 30% of the patients benefited significantly from their stay, and about half of them showed at least some improvement."

#SevereME #MEcfs #CFS #PwME

@mecfs

Telehealth as a Care Solution for Homebound People: Systematic Review and Meta-Analysis of Healthcare Utilization, Quality of Life, & Well-Being Outcomes

https://onlinelibrary.wiley.com/doi/full/10.1155/hsc/7224151

"telehealth emerges as a viable alternative to conventional care, significantly reducing healthcare utilization & enhancing both HRQOL and well-being for #homebound people"

#chronicillness #Spoonies #Spoonie #SevereME #SevereMECFS @mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC

Exciting to see this 🔥

Specialised care for severely affected ME/CFS patients

Free:
https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2565101

Would be great to have such facilities in countries around the world. Approach is very different from the (inappropriate/dangerous) rehab/BPS approach

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME

ABSTRACTIntroduction: A specialised care unit for severely and very severelyill ME/CFS patients opened in 2021. The results from the first 3 yearsare reported.Methods: People with ME/CFS who were diagnosed according tothe Canadian Consensus Criteria, who are aged 18 or above withsevere or very severe ME/CFS according to the UK NICEguidelines, are eligible to stay at Røysumtunet. The study designis a retrospective review of medical records.Results: Between June 2021 and June 2024, 24 ME/CFS patients, 20women and 4 men with a confirmed diagnosis of ME, wereadmitted to the unit for stays of at least 3 months. Seventeenwere very severely affected and 7 were severely affected. Agesranged from 18 to 68 years, with mean (SD) 37.5 (12.8) years.Seven patients showed significant improvement (p < 0.01), andfive others showed some improvement. In total 50% improved (p< 0.01). Patients who improved were borderline significantlyyounger than those who did not, with a mean age of 30.3 (SD12.6) years compared to 39.8 (SD 11.8) years (p = 0.06). The meanduration of disease was 2.3 (1.3) years for those who improvedversus 6.7 (3.9) years for those who did not improve (p < 0.05).Conclusion: This is the first report of a specialised care unit for themost severely ill ME/CFS patients. Fifty per cent of patients showedsignificant or partial improvement. The mechanisms behind theseimprovements are discussed but require further exploration infuture studies.

Evel writes many of our posts and is writing this one too! :gay_cactus:

I'm Native (Xicane) and #autistic and #bedbound. All the writing, design, and so on is done right from my bed! Which is actually a hammock!

I love #dogs, write #poetry, graphic design is my passion, and I'm #dyslexic and #queer and exhausted af.

And subscribe to my dog's patreon! https://www.patreon.com/wickedflare

#disabledArtist #severeME #MEcfs #Indigedon #CreativeNatives #brainWeird #actuallyAutistic #2spirit #intro #gamedev

From 2022 but I suspect many people are like me & missed there was an update for this highly praised resource (see some reviews here https://www.severeme.info/reviews/ ).

Image from Action for ME members' magazine

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Support for severe M.E.
Do you have severe M.E. or care for someone who does?

SPEED READ...
A book providing guidance for people with severe M.E. has been
updated. Written by the late Emily Collingridge and first published in
2010, the book, Severe ME/CFS: A Guide to Living, has been brought in
line with the 2021 NICE guideline and contains revised information about
welfare benefits. It can be ordered at www.actionforme.org.uk/shop

The latest edition of Severe ME/
CFS: A Guide to Living is now
available.
Published in 2010, this invaluable
book was written by the late Emily
Collingridge, a patient with more
than 12 years’ experience of severe
M.E., in consultation with more than
30 patients, carers, friends, relatives
and health professionals.
“Emily’s book is the legacy she left
behind to support us all. I don’t
know how I’d have coped without it.
It has been my M.E. bible. I wish I
could thank her, but no thanks could
ever convey the depth of my
gratitude.” Kara, severe M.E. patient
The book’s 144 pages offer
guidance on every conceivable area
of life with severe M.E. at any age, as
well as specific help for carers, loved
ones, health and social care
professionals and home tutors. It
sets out to answer questions like:

2/
A knowledgeable individual has seen it and written this about it, which starts: “based on a quick skim, there is a lot of good in this. Briefly - it includes:”

https://www.s4me.info/threads/nhs-england-launches-new-e-learning-module-on-me-cfs-2024.38610/page-8#post-639691

#SevereME #MEcfs
@mecfs

#SevereME

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