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Tom Kindlon

@tomkindlon.bsky.social

Shared with permission

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

Drawing of very wilted plants

camilla @predi_cam_ents
The plants from @thechronicchloe ’s room have all been moved🪴. She barely tolerates any light lately and they were slowly wilting. Every time I see them I’m reminded of yet another thing she’s lost to ME/CFS 😔

November 1, 2025 at 6:32 PM Everybody can reply

15 reposts 43 likes

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Bettina Grande

@bettinagrande.bsky.social

Teilprojekt 4 von #PAISCare
an der #Charite startet:

Die Psychotherapeutische Begleitung schwerst an #MECFS Erkrankter.
Basis einer begleitenden Psychotherapie,
die schützt statt fordert,
ist ein eigens entwickelter klinischer Leitfaden.

pcn.charite.de/teilprojekte

#SevereMe #PEM #NoGET

Teilprojekte: Charité – Universitätsmedizin Berlin

pcn.charite.de

October 29, 2025 at 8:52 PM Everybody can reply

18 reposts 47 likes 2 saves

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Tom Kindlon

@tomkindlon.bsky.social

I was just clearing out some files & came across this letter in a 2009 Action for ME magazine.

Poignant to read Emily Collinridge’s letter given she herself tragically passed away herself a few years later. 😢

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

Sad but wonderful legacy
I was deeply moved to learn of the heartbreaking story of Lynn Gilderdale whose tragic battle with very severe M.E. came to an end in December. I was also heartened by the immense compassion shown by the media towards Lynn's suffering. Headlines such as "I have seen paralysed patients, dying AIDS victims and starving children... but I've never seen anyone as ill as Lynn" will have made a huge impact on every reader. Lynn's sad, but wonderful legacy has been to increase understanding of the true horror of severe M.E.; something which, along with research into the causes and mechanisms of the illness and an effective treatment, is desperately needed.
Sadly though, advocates of the Lightning Process (LP) were quick to hijack Lynn's story, promoting their therapy as a cure and detracting from the real issue. Articles should have been calling for further investment in research, but instead some implied that Lynn's death could have been prevented by a money-making scheme such as LP or by hope alone. However,
many of us know from bitter experience that this is not the truth. Firstly LP (and other such alternatives) carry tremendous risks which are rarely reported and secondly, hope does not ameliorate horrendous pain. People cannot be expected to live with such suffering indefinitely.
Like Lynn I have had M.E. for the majority of my life and like Lynn I have been so severely affected that at times my life has been in danger. Unlike Lynn I have been blessed with enough improvement to help me continue the battle, but I still know only too well that mere hope of recovery is not always sufficient to make life bearable; more has to be done for us all than 'miracle cures' (which work only for a minority) and it has to be done urgently.
I therefore thank Action for ME for your current efforts to push research to the top of the agenda. Let us hope that as many people as possible throughout the country and the world, support your lead.
Emily Collingridge…

November 1, 2025 at 2:03 PM Everybody can reply

8 reposts 23 likes

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Hippymum

@hippymum.bsky.social

This is my life for up to 22 hours a day, every day. I can't tolerate bright lights or noise. Raising awareness of Severe M.E. on BED For Severe ME Day with ME Foggy Dog and Stripy Lightbulb CIC

#BEDForSevereME #PyjamasAndProtocol #PyjamasForSevereMe #SevereME

Photo shows a woman in pink pyjamas lying in bed wearing an eye mask.

October 29, 2025 at 10:54 AM Everybody can reply

4 reposts 17 likes

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Tom Kindlon

@tomkindlon.bsky.social

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

Kerry Newnham @Squashedhedgi
This #Halloween2025, the scariest story isn’t fiction—it’s #SevereME patients neglect

No medical care, no treatments & few clinical trials after years of neglect & harm

#GhostedByDoctors, left #BedboundBanshees in the dark. #UnmaskMENeglect #FreeUpFunding #EndTheHorrorOfME

Heading understanding severe ME
World ME Alliance
#SevereMEDay
Photo of someone lying in bed
with the following words around the picture
-constant pain
-house or bed-bound
-a living death
-tube-feeding
-darkened glasses
-unmanageable post-exertional malaise
-unable to think
-bone-crushing fatigue
-constant pain

October 31, 2025 at 1:04 PM Everybody can reply

6 reposts 13 likes 1 saves

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Tom Kindlon

@tomkindlon.bsky.social

Rosie Barrett, writes on #SevereME & hospital care
www.thereforme.uk/p/sensory-he...

"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm."

Screenshot from @chronicliving123.bsky.social
newsletter

chroniclivingtherapy.com/5-elsewhere-...

#MEcfs

Rosie Barrett, writes on Severe ME and hospital care
Rosie Barrett, full time carer for her sister who has very severe ME, writes for ThereForME‘s website about the way that hospitals fail people with ME/CFS and what is needed to support patients better. She writes about the UK but readers from around the world will recognise shared issues.

Hospitals should be places of healing – but for people with severe ME, they are often sources of harm.
The NHS urgently needs to create sensory-safe spaces. These aren’t ‘nice-to-haves’ – they are essential for people with ME and others with complex neurological conditions. The one-size-fits-all approach to hospital care simply does not work for patients like Alice.

from Sensory Hell and Medical Harm by Rosie Barrett on the ThereForME website

October 31, 2025 at 1:51 AM Everybody can reply

4 reposts 12 likes 1 saves

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Liz Nevra A.

@nlizaki.bsky.social

Nevra is the only visible ME advocate in the MENA region — a region where the illness isn’t even recognised.

Losing her would mean losing a vital voice for millions left unseen.

This is a global responsibility. Please don’t look away.

#MEAction #SevereME #ChronicIllness

October 24, 2025 at 9:51 PM Everybody can reply

2 reposts 5 likes

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Something Chronic

@somethingchronic.bsky.social

This is a brilliant explanation of PEM!

#MEcfs #SevereME #LongCovid #StopRestPace

keri @keristars.bsky.social · 13d

Something I think people really don't understand about ME/CFS vs other fatigue illnesses is how the fatigue symptoms can be delayed for us, and how they accrete, like katamari damarcy.

We do feel exhaustion upon exertion, often much faster or with less effort than others expect. This is true!

1/x

October 24, 2025 at 11:24 PM Everybody can reply

3 reposts 9 likes

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ME Association

@meassociation.org.uk

Gordon family provide information on Karen’s Mental capacity assessment and response from ESHT solicitors

Read the update on the blog, and sign the petition: https://meassociation.org.uk/yyaq

#MECFS #pwME #SevereME #KarenGordon #NHS #MyalgicE

Gordon family provide information on Karen's Mental capacity assessment and response from ESHT solicitors - The ME Association

Karen has now been in Conquest hospital for 1 year […]

meassociation.org.uk

October 24, 2025 at 8:36 AM Everybody can reply

4 reposts 6 likes

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María Richardson

@diatoma.bsky.social

Please check out this thread @lastweektonight.com
and @johnvsjonvsme.bsky.social
#JohnVsJonVsME #GreatestMEdicalScandal

Folks w #SevereME have suffered for DECADES in dark silent rooms & this is what's offered.

@johngreensbluesky.bsky.social @hankgreen.bsky.social @markruffalo.bsky.social

It's ME(Jaime) @exceedhergrasp1.bsky.social · Jun 1

And... I cannot stress this enough: this is supposed to work in three days, and it costs thousands of pounds. Here are some words from a person asked to describe their experience w/the Lightning Process.

@lastweektonight1.bsky.social
@thedailyshow.bsky.social
#JohnVsJonVsME

John Oliver, a white man wearing glasses and a suit gestures with both hands, looking serious. To his left is a quote from a patient. "You ask yourself if you want to choose happiness. Which you obviously do and then you say how fantastic you are to have stopped the negativity thought. You ask yourself what you really want, then you answer yourself, and again ask yourself how you are going to get there. The answer of course is to keep doing the process, getting rid of those negative thoughts. Then you tell yourself how great you are again and maybe have a bit of a hug with yourself, then... no nothing, that's it."

October 23, 2025 at 4:21 AM Everybody can reply

3 reposts 1 quotes 7 likes

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Verena Hackl

@verhac.bsky.social

von Schule & der (großteils alleinigen) Pflege der schwerkranken Mutter mit #MECFS bestehen?
Und raten Sie einmal, welche Pflegegeldstufe - und ob überhaupt eine?

Das ist Ihre flächendeckende Versorgung von #MECFS!
#SevereME
2/2

October 21, 2025 at 6:16 PM Everybody can reply

1 reposts 40 likes

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Something Chronic

@somethingchronic.bsky.social

This brilliant video about the #GreatestMEdicalScandal has been out for a while but it’s worth reposting in case you haven’t seen it…

If you don’t know much about #MEcfs or #LongCovid, or aren’t aware of the shocking treatment of people, please watch & help advocate for us!

#JusticeForME #SevereME

ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

YouTube video by Broken Battery

m.youtube.com

October 21, 2025 at 7:07 PM Everybody can reply

4 reposts 7 likes

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Liz Nevra A.

@nlizaki.bsky.social

💖 Save Nevra – October Update 💖 1/2 (thread)

Nevra is in severe medical decline after mold exposure & overexertion while fundraising beyond her limits.

💜 PayPal.me/SaveLizNevra
💜 GoFundMe.com/f/save-nevra

#SaveLizNevra #SevereME #MECFS #MillionsMissing

October 18, 2025 at 8:59 PM Everybody can reply

8 reposts 9 likes

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Liz Nevra A.

@nlizaki.bsky.social

Part 1- Nevra got ME at 6, missing her childhood — and now her 20s are being stolen too. She’s still so ready to live but has declined further and can no longer make videos.

www.gofundme.com/f/save-nevra

#MutualAid #pwME #SevereME #DisabilityJustice
#DomesticViolence
#mecfs

October 16, 2025 at 5:21 PM Everybody can reply

5 reposts 8 likes

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mdmsel.bsky.social

@mdmsel.bsky.social

Heute war Demo vor dem Bundesforschungsministerium, das bis heute keine Zahlen nennen will, was in Sachen Medikamentenforschung bei #MECFS gefördert wird. Während #severeME sterben. www.instagram.com/reel/DP0vt7-...

Auf dem Bild sieht man eine Straße, auf der schwarze Leichensäcke liegen, im Hintergrund ist ein großes Plakat mit MECFS Lebendig begraben. Frau Bär: wo bleibt Merz‘ Forschungsdekade? Daneben sind Fotos von Erkrankten zu sehen

October 15, 2025 at 4:47 PM Everybody can reply

9 reposts 31 likes 1 saves

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Tom Kindlon

@tomkindlon.bsky.social

The Shower

meglobalchronicle.wordpress.com/2024/12/17/t...

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

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

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.

October 16, 2025 at 4:38 PM Everybody can reply

2 reposts 9 likes

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Anna (needs a SAFE HOME)

@halcionandon.bsky.social

Is there anywhere left to post that’s friendly to #community?

I’ve seen communities esp #ChronicIllness fragmented over the past few years & there doesn’t seem to be anywhere for us to go.

I don’t have the energy to go to multiple platforms & man I’m tired.

#MECFS #SevereME
#Neisvoid

October 15, 2025 at 4:42 AM Everybody can reply

5 likes

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Something Chronic

@somethingchronic.bsky.social

@chrisgpackham.bsky.social me too

#SevereME #JusticeForME #TakingThePIP

October 13, 2025 at 6:59 PM Everybody can reply

5 likes

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Tom Kindlon

@tomkindlon.bsky.social

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

record.assembly.wales/Motion/8884

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
@severemecymru.bsky.social

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;

e) improve the training on ME for professionals, firstly in the NHS, but also in social services and schools: in particular, raising awareness of the care needs of adults and children with severe and very severe ME; and

f) ensure that health boards truly co-produce their ME and long COVID Adferiad services, taking into account the lived experiences of those suffering at the severest levels and of those caring for them.

October 12, 2025 at 2:36 PM Everybody can reply

2 reposts 9 likes 1 saves

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Tom Kindlon

@tomkindlon.bsky.social

"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

meglobalchronicle.wordpress.com/2023/12/23/i...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @ludiekje.bsky.social

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.

October 10, 2025 at 5:54 PM Everybody can reply

3 reposts 2 quotes 19 likes 2 saves

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Tom Kindlon

@tomkindlon.bsky.social

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

meglobalchronicle.wordpress.com/2022/09/25/l...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @ludiekje.bsky.social

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.

October 9, 2025 at 6:33 PM Everybody can reply

5 reposts 2 quotes 19 likes

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Tom Kindlon

@tomkindlon.bsky.social

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

meglobalchronicle.wordpress.com/2022/09/25/l...

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

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.

October 9, 2025 at 6:22 PM Everybody can reply

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Something Chronic

@somethingchronic.bsky.social

For anyone unfamiliar with what #ME/CFS this is a video explaining very #SevereME.

If you watch you’ll understand how utterly disgraceful Wessely and the BPS’ attitude towards ME patients is and why they’re such a concern for others including the #trans community.

m.youtube.com/watch?v=J9fQ...