Chronic Living Therapy (a directory)

Mike Harley is a marathon running machine, raising funds for ME research. £52,000 and counting!

@mikeseumarathons.bsky.social

#MECFS #LongCovid #pwME

Simon Wessely — the controversial psychiatrist once dubbed “Britain’s most hated doctor” has been appointed vice chair of Labour’s review into overdiagnosis of mental health and neurodivergence.

www.benefitsandwork.co.uk/news/controv...

Over diagnosis of 'hysteria' might be a more appropriate enquiry...

Westhill mum of long Covid girl invites SNP health chief to see suffering for himself Helen Goss says her daughter Anna, 12, is one of the “forgotten children” who deserve better.

A 'mum whose daughter has struggled for years with the effects of Covid is inviting SNP health secretary Neil Gray to hear her story in person at their home'
“Her room is like a hospital. She’s very sick and that’s what I want him to see.” @helen-goss.bsky.social

bit.ly/3IJ3PZY #LongCovidKids

Perhaps qualifies as a tip?

I never walk very far (mainly within my house) but to try to prevent myself slipping into anaerobic exercise mode, I try to stop myself moving for a few seconds a few times along the way. My natural inclination is to move faster than is probably good for me.
#MEcfs #PwME

The Trouble With Recovery Stories Posted on 5th Nov 2024 Photo of somebody up a tall mountain near the edge

🧵
"The Trouble With Recovery Stories" by Naomi Whittingham @naomiwhitt.bsky.social (with severe ME for decades)

alifehidden.com/2024/11/05/r...

An excellent, articulate article discussing “Recovery Stories” and the complex impressions and impacts they bring about

#MEcfs #CFS #PwME

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Failed by the NHS on chronic fatigue illness | Letters Letters: Prof Paul Garner, Dr Maria Pedersen and Dr Alastair Miller, plus two other readers, respond to Patrick Barkham’s article on his daughter’s Lyme disease diagnosis

'Approaches that work for many.. based on.. how brain, thoughts, feelings & activities interact.. relating stressors to brain-generated danger signals.. shown to be effective for people with #LongCovid'

This belief ignores 5 1/2 years of Long/Covid research.

www.theguardian.com/world/2025/o...

A screenshot from the Guardian Letters page, the link to which is in the next post below, which reads " In the absence of clear explanations and effective solutions, it is entirely understandable that families may turn to a variety of for-profit, fringe medicine options. While Patrick’s faith and optimism may indeed help Milly recover, there is no reliable evidence linking a chronic Borrelia infection to her symptoms; and the effectiveness of long-term antibiotics has not been demonstrated. Milly’s exhaustion is typical of a group of conditions known as “persistent physical symptoms”. They arise when biological defence systems, evolved to keep us safe, go awry. Approaches that work for many are based on knowledge of how the brain, thoughts, feelings and activities interact. This knowledge is explained to patients in a dialogue, relating stressors to brain-generated danger signals; and this becomes integral to a negotiated, bespoke rehabilitation plan. This approach has been shown to be effective, including in two well-conducted, recent trials from Norway, one for people with the post-Covid condition, and one for people with “medically unexplained symptoms”. Unfortunately, it seems that Milly’s mind-body approach was implemented in a suboptimal way. This led her to feel responsible for her symptoms, rather than understand that they arise from the body’s natural responses. Such feelings of guilt can hinder recovery, and should have been carefully addressed. Prof Paul Garner Liverpool School of Tropical Medicine Dr Maria Pedersen Oslo University Hospital and University of Oslo Dr Alastair Miller Former lead, neurological infection service, Liverpool Royal University Hospital"

I see discredited Prof Paul Garner et al yet again barging into Guardian Letters on a tragic #Lymes story - why do @theguardian.com keep publishing their anti-science bullshit?

They'll never miss any inappropriate opportunity to leverage in their weird BPS beliefs on #LongCovid #MECFS.

Link below

👋 Quick update

We do now have an acknowledgement of receipt and promise of proper follow up.

Open Letter to the BACP magazine Therapy Today is the flagship members' publication of the British Association of Counselling and Psychotherapy. Getting a long, in depth article in there is a big deal and reaches a lot of therapists. The September issue included a long article about chronic illness, and much of it was good. The section on ME/CFS was, however, really disappointing. It platformed outdated and unscientific 'mind body' solutions, 'trauma' as an underlying cause, etc. A group of therapists and others came together with Chronic Living Therapy and wrote an Open Letter to the Editor. We've not yet had an acknowledgement, but it's published on our website. You can read it and drop me a line to be added if you wish to sign: Open Letter to the Editor, Therapy Today

From the September 2025 Chronic Living @chronicliving123.bsky.social Therapy newsletter

Open Letter to the British Association of Counselling & Psychotherapy (BACP) magazine by @lammasleaves.bsky.social et al

chroniclivingtherapy.com/open-letter-...

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME

Burden of disease in ME/CFS Disease burden is the impact that a health problem has in a population, and can be measured by looking at one of the following: • Individual quality of life • Financial costs • Unemployment rates • School attendance • Disability adjusted life years (DALYs; one DALY is the loss of the equivalent of one year of full health) A broad review of the literature (scoping review) aimed to answer the question "What is known about the global health, social and economic burden of ME/CFS?" Differences in study methodology meant that costs could not be directly compared, and no estimate for the global disease burden of ME/CFS could be calculated. Despite this: Costs associated Some costs were DALYs were higher for with ME/CFS were 'direct', primarily ME/CFS than for other mostly 'indirect' e.g. relating to diseases e.g. HIV/AIDS loss of earnings. healthcare. and MS. Vester et al. Applied Health Economics and Health Policy (2025) INFORM. INFLUENCE. INVEST. SCO36942

From ME Research UK:

A team of researchers in Hamburg set out to answer the following question “What is known about the global health, social and economic burden of ME/CFS?”. Read about the study findings here: tinyurl.com/ybdyeu54

#MEcfs #CFS #PwME

I have #ME, know 100s #pwME, many the direct subject of this NHS training module.
FOUR senior Health Care Workers within my family network:
*None even aware the training exists*
Most treat #pwME for co-morbidities.
‘Access denied’ is evidence of NHS confidence in the quality of this hidden training.

1) A major genetic study on fibromyalgia just came out with DNA samples from 50.000 patients and 2.5 million controls.

Most of the hits point to the brain and several implicated genes (RABGAP1L, OLFM4, DCC) were also found in the DecodeME study on ME/CFS.

“Placebo was considered more effective for functional than non-functional disorders by healthcare professionals, but not by patients”

Interesting. Gives information on how professionals view functional disorders.

I believe a FND diagnosis => Find New Doctor

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Katharine Cheston: exploring stigma, shame and illness - Chronic Living Therapy Interview with Katharine Cheston, social/cultural researcher into the stigma and shame experienced by people with ME MECFS and similar illnesses

Think you might enjoy this excellent interview and what Katharine Cheston has done (is doing) with her returned health...

chroniclivingtherapy.com/katharine-ch...

Sounds promising. (So long as they don’t go the graded exercise /psychology route)

A regal-looking coyote sits up on a mossy bed atop a layered limestone cliff. A thick forest is only just starting to feel the warmth of the rising sun.

The watcher.
One of a pack of coyotes I met the other morning while out on the kayak. This one kept a close eye on me from it perch on the cliffs. #mammals 🌿

Violet Affleck Addressed the United Nations, Calling for Better Protection From COVID-19 Ben Affleck and Jennifer Garner’s eldest daughter is becoming a thoughtful and passionate advocate for public health.

Worth reading and supporting this article on Violet Affleck’s advocacy for clean air and COVID mitigations.

We should always support our youth when they step up and want to engage in making the world a better place.

www.elle.com/culture/cele...

Get in touch - Chronic Living Therapy Drop us a message Sign up for our newsletter! Receive updates about developments at Chronic Living Therapy, useful resources and articles. Marketing Permissions We use MailerLite for handling your con...

Monthly newsletter from Chronic Living Therapy getting sent out to subscribers in the next four or five days - be great to have you on the mailing list!

✒️ sign up on this page:

chroniclivingtherapy.com/get-in-touch/

ME (aka #ME/CFS) - is a serious, chronic, systemic and highly neglected physical NCD affecting an estimated 240 million people - deserves urgent global attention having remains woefully under-recognised for far too long.
Despite its severe and disabling nature, ME is often hidden under vague

Germany The Sick Times spoke with twelve people who went to rehabilitation clinics in Germany. The country’s insurance system pushes people to go through these clinics before they can access disability supports. Patients feel pressured to partake in exercise-based therapies that can make their disease worse. Article | Thread

" @thesicktimes.org spoke with twelve people who went to rehabilitation clinics in Germany...patients feel pressured to partake in exercise-based therapies that can make their disease worse."

thesicktimes.org/2025/09/16/g...

Screenshot from Science for ME weekly update

#LongCovid #MEcfs

Long Covid linked to heavier periods and risk of iron deficiency Survey of 12,000 women also revealed severity of long Covid symptoms rose and fell across menstrual cycle

The Guardian: 'Long Covid linked to heavier periods and risk of iron deficiency'

'Survey of 12,000 women also revealed severity of long Covid symptoms rose and fell across menstrual cycle'

www.theguardian.com/society/2025...

The proportion of family doctors who, although qualified, do not provide care through the NHS has risen from 27% in 2015 to 34% last year, according to a study published in the BMJ. That means almost 20,000 GPs who could be working in the health service are "lost" to it and are not doing so, despite unprecedented demand for care and many government initiatives to try to increase GP numbers. While a total of 58,548 GPs in England were on the General Medical Council (GMC) register at the end of last year, only 38,626 of them were in general practice there - a difference of 19,922.

I am one of those GPs currently ‚lost‘ to the NHS, due to #LongCovid.

How many of us are there?

Nobody knows, because nobody is asking the question and gathering the data (I have approached the RCGP trying to find out - they couldn’t tell me).

www.theguardian.com/society/2025...

‚It is an appalling failure of research, fact checking and editorial supervision that an otherwise informative and necessary piece about the experiences people with chronic health conditions has misled readers in such crucial ways and perpetuated these damaging myths.‘

#ME

Thank you so much to everyone w/ME/CFS and our families, docs, researchers for taking this—evidently already 800 people!!

Esp grateful for everyone’s time as it turns out it’s often taking more like half an hour. So appreciate everyone‘s effort to move the field forward.

Will stay open ~a month!

Open Letter to BACP magazine, Therapy Today - Chronic Living Therapy A recent article in the magazine for members of the British Association of Counselling & Psychotherapy (BACP) has highlighted again the need for research, factual investigation and informed debate abo...

We are very happy to have signed this letter and fully support this Chronic Living Therapy campaign.

chroniclivingtherapy.com/open-letter-...

#pwME

Home - Chronic Living Therapy Introducing… Chronic Living Therapy Counsellors who understand M.E., Long Covid and Other chronic Illnesses Coming soon… Chronic Living Therapy directory will be launching soon to provide an online di...

This looks like another good resource I should add to a forthcoming page about Severe ME on the www.chroniclivingtherapy.com website... Thanks for sharing.

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: “Washing makes me feel ill; what should I do?” • “I’m struggling to eat; how can I avoid malnutrition?” • “My medical team doesn’t know anything about severe M.E.; how can I get them to understand?” • “Some of my symptoms are very frightening; what can I do about them?” • “I’m finding basic daily activities really difficult; is there any equipment that could help me?” Over the past few months Action for M.E. has been honoured to work with Emily’s mother, Jane, and her friends, Naomi and Victoria, to update Severe ME/CFS: A Guide to Living in line with the 2021 NICE guideline for M.E. and revised information about welfare benefits. Jane is also responsible for the www. severeme.info website while Naomi and Victoria manage the guide’s Facebook page.…

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

Image from Action for ME members' magazine

#SevereME #MyalgicEncephalomyelitis #MEcfs #CFS #PwME @naomiwhitt.bsky.social

Thank you 🌟

This is PRECISELY why ME has to be universally recognised as a physical illness, so doctors can do justice to the patient in front of them - this letter shows EXACTLY how, by blurring the issue (mind/body blabla), we can do justice neither to a person’s physical nor their mental health.