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Chronic Living Therapy (a directory)

@chronicliving123.bsky.social

Soon launching - a directory of therapists who understand the biomedical nature of #MECFS, #LongCovid and many other chronic illnesses. https://chroniclivingtherapy.com/

29 Posts200 Follower453 Folgt
Nicky Proctor@nickyproctor.bsky.social · 8mo ago

@ashleydaltonmp.bsky.social Your words “these must become never events” PLEASE INTERVENE TO SAVE LIFE Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS www.meresearch.org.uk/claims-of-nh...

Claims of NHS inaction over specialist services for severe ME cases – Savannah Victora-May

* Caution - This article contains a report of the medical condition and treatment of a person with severe ME* My body cannot take even a shred more of this. I’m not physically able to continue, I am s...

meresearch.org.uk

Alex@admiringbog.bsky.social · 8mo ago

Getting diagnosed with endometriosis kind of felt like getting diagnosed with ME/CFS all over again. The years long diagnostic process, the lack of good treatment options, the lack of funding for research, and in the back of my mind, knowing the symptoms can get much much worse.

Kelly@broadwaybabyto.bsky.social · 8mo ago

A short film about endometriosis has won a BAFTA, bringing much needed visibility to the disabling condition. Endometriosis and adenomyosis robbed me of years of my life. Countless surgeries, blood transfusions and hospital stays. Doctors saying it was “no big deal”. It’s a very big deal:

Didier@medidier.bsky.social · 8mo ago

The f**** pictures, the title with CFS instead of ME, the somewhat justification of abuse and gaslighting, the 'recovery' narrative permanent bullshit, the total silence about daily life of severe... www.theguardian.com/society/2026...

My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’

The long read: I suffered with my mystery illness for decades before gaining a diagnosis. Could retraining my brain be the answer?

theguardian.com

Adam@abrokenbattery.bsky.social · 8mo ago

Update on Savannah: They are now urgently seeking any UK doctors or hospitals willing to provide TPN and restart cyclizine. If no safe option is found, they are even considering treatment abroad. If you have suggestions, please fill in the form tally.so/r/81KxGO

Please share any trusted doctors for (very) severe pwME. UK or Western Europe. NHS or private.

Made with Tally, the simplest way to create forms.

tally.so

Adam@abrokenbattery.bsky.social · 8mo ago

TW: Update on Savannah via GoFundMe: Donations have now funded legal action. Sonya Chowdhury (CEO Action for ME) has briefed a solicitor as well as Savannah’s MP. I’ve donated again. Also includes a diary style update of her experience in hospital. www.gofundme.com/f/severemerg...

Michiel@murtoz.bsky.social · 8mo ago

@everydoctor.org.uk are you aware of the below situation? A repeat of what happened to Maeve in 2021. Coroner's urgent findings in 2024 PFR completely ignored. While questions have been asked in parliament, nobody seems willing to overrule the hospital that is literally starving her to death. HELP!

Adam@abrokenbattery.bsky.social · 8mo ago

TW: Update on Savannah via GoFundMe: Donations have now funded legal action. Sonya Chowdhury (CEO Action for ME) has briefed a solicitor as well as Savannah’s MP. I’ve donated again. Also includes a diary style update of her experience in hospital. www.gofundme.com/f/severemerg...

Lucibee@lucibee.bsky.social · 8mo ago

I was particularly surprised by this "aim" from RCP that all of their ~40,000 members would undertake the modules by the end of 2025. Particularly as (afaik) they have made no attempt to tell members about the modules, and no CPD points are available for completing the modules. #MEDeliveryPlan

Lucibee@lucibee.bsky.social · 8mo ago

2/n The reason I asked was because the ME/CFS Delivery Plan makes some quite distinct promises (alright, "aims") about their e-learning package, including this item in their table of Agreed Actions. www.gov.uk/government/p...

Extract from the ME/CFS Final Delivery Plan (UK Government, 22 July 2025). Action: The Royal College of Physicians (RCP) will ensure that its training on ME/CFS keeps pace with research and guidance in the core postgraduate training for primary and secondary care physicians. Progress: RCP will, for now, rely on NHS England’s e-learning modules, which are considered suitable by RCP. Timeline and measure of success: Aim for all RCP members to undertake the e-learning by the end of 2025. My comment: This should be easily measurable. Has it been achieved?
Dr Jo Greer@drjogreer.bsky.social · 8mo ago

Concerning that the trust have issued a misleading statement about Tessa's position. 'We welcome MP Munt’s call for more support for patients living with severe ME, including care facilities that are better suited to non-medical care and rehabilitation.' Non medical care and rehabilitation??

Tessa Munt MP 🔶@tessamunt.bsky.social · 8mo ago

Thanks to The Times for highlighting Savannah’s story and the critical issue that there is no specialist NHS service for very severe ME. Grateful to Ashley Dalton for our recent brief call but still waiting for progress report re ME Plan commitment to explore such a service, including treatments.

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Elke Hausmann@drelke.bsky.social · 8mo ago

How many people like this doctor are walking around thinking that ‚maybe this was what being in my mid-30s entailed: I had begun an early neurocognitive decline, and that was that‘. #LongCovid underdiagnosis

The word-finding difficulties were the most debilitating and bothersome to me. I often found myself frozen in time, unable to verbalize words that were familiar to me, while delivering patient reports or presentations to my supervisors or in casual conversations. I had the words in my mind and could visualize them, but I simply could not verbalize them. I was unable to piece together what was happening to me. I thought that maybe this was what being in my mid-30s entailed: I had begun an early neurocognitive decline, and that was that. However, I was determined to not let these symptoms beat me. I decided to do something about the situation.Since coming to terms with long COVID, I have had many conversations with family members and friends who have reported similar symptoms that followed their acute COVID-19 illness, persisting for months and even years. They too have realized that they have been casualties of COVID-19 and have been suffering with long COVID well after their acute infection.
Tania J. Spencer@taniaspencer.bsky.social · 8mo ago

1/ "Given the evolving but incomplete understanding of #LongCOVID, it is important to bring awareness to this emerging disease & begin to make changes in how we diagnose and treat patients suffering from it": @cmadocs.bsky.social pmc.ncbi.nlm.nih.gov/articles/PMC...

Lucibee@lucibee.bsky.social · 8mo ago

wrt this action statement in the #MEDeliveryPlan, are there any UK GPs on here who can confirm whether the RCGP has indeed been sharing and promoting the NHSE e-learning modules on ME/CFS? Thanks!

Lucibee@lucibee.bsky.social · 8mo ago

3/n The UK Government stated that "The Royal College of General Practitioners, the Chartered Society of Physiotherapy and the Royal College of Occupational Therapists agreed to share and promote NHS England’s e-learning modules," and that they were working with the Royal College of Nursing.

Extract from the UK Government's ME/CFS Delivery Plan. Attitudes and education. Action: DHSC will ask relevant stakeholders to: a) consider developing a shared learning resource on ME/CFS, which could be held in an education hub, b) request that the Medical Schools Council (MSC) encourages shared learning and the NHS England e-learning package on ME/CFS to all UK medical schools and encourages medical schools to provide undergraduates with direct patient experience, c) use its networks to raise awareness of NHS England’s e-learning module on ME/CFS. Progress: Discussed potential education hub with the Task and Finish Group - to be explored further. DHSC discussed raising awareness of NHS England’s e-learning with relevant professional bodies. The Royal College of General Practitioners, the Chartered Society of Physiotherapy and the Royal College of Occupational Therapists agreed to share and promote NHS England’s e-learning modules. DHSC will continue to reach out to networks including the Royal College of Nursing to promote NHS England’s e-learning modules. NICE has added e-learning to its tools and resources page, with further modules to be added as they become available. DHSC to develop and run a public awareness initiative on ME/CFS, and signpost to e-learning and NICE guidelines as part of the initiative. Timeline and measure of success: Sharing of resources with a wider stakeholder group and a public awareness initiative (by May 2026) are expected to improve both the public and professionals’ understanding of ME/CFS. E-learning to be shared with stakeholders in July 2025. NHS England’s user statistics and feedback on DHSC-led awareness initiative to be monitored and reviewed.
valebodi.bsky.social@valebodi.bsky.social · 8mo ago

The German Accident Insurance (Deutsche Unfallversicherung) forces people with #MECFS to undergo diagnostic tests as part of the evidence gathering process for expert opinions, tests that can be extremely harmful to the patients – my exclusive investigation @riffreporter.bsky.social is available ⬇️

Martin Rücker@martinruecker.bsky.social · 8mo ago

Die Dt. Unfallversicherung zwingt Menschen mit #MECFS im Rahmen der Beweisaufnahme bei Gutachten auch in Diagnose-Tests, die den Patienten massiv schaden können – meine Recherche exklusiv @riffreporter.bsky.social ist jetzt frei lesbar: www.riffreporter.de/de/wissen/un...

Cass Macdonald@cm7505.bsky.social · 8mo ago

Thanks for everything you’re doing. I recently had an exchange over training; there is NO formal MSc in post viral conditions like MECFS and if we want properly qualified, specialist healthcare professionals for this, Long Covid, PoTS, MCAS etc, that’s what’s needed. I despair

Michiel@murtoz.bsky.social · 8mo ago

it's beyond pitiful. less than 0.0055% of NHS doctors & nurses with basic awareness of severe ME. This is what happens when the govt doesn't put their money where their mouth is. Just more hot air and neglect They can't be this incompetent? This has to be intentional. Protecting Sir Simon?

Lucibee@lucibee.bsky.social · 8mo ago

5/n Today, I received their answer. This is the data table they sent me, of the number of people who have completed each of the 3 modules up to 20 January 2026:

Table shows the numbers completing each module, split by type of email account. An asterisk indicates there were 5 or fewer. Module 1: An introduction to ME/CFS = 8 (.gov.uk), 51 (.ac.uk), 227 (.nhs), 85 (other). Module 2: ME/CFS: guidance for community-based healthcare practitioners = 8 (.ac.uk), 74 (.nhs), 19 (other). Module 3: Managing severe ME/CFS = * (.gov.uk), 7 (.ac.uk), 33 (.nhs), * (other).
Lucibee@lucibee.bsky.social · 8mo ago

3/n The UK Government stated that "The Royal College of General Practitioners, the Chartered Society of Physiotherapy and the Royal College of Occupational Therapists agreed to share and promote NHS England’s e-learning modules," and that they were working with the Royal College of Nursing.

Extract from the UK Government's ME/CFS Delivery Plan. Attitudes and education. Action: DHSC will ask relevant stakeholders to: a) consider developing a shared learning resource on ME/CFS, which could be held in an education hub, b) request that the Medical Schools Council (MSC) encourages shared learning and the NHS England e-learning package on ME/CFS to all UK medical schools and encourages medical schools to provide undergraduates with direct patient experience, c) use its networks to raise awareness of NHS England’s e-learning module on ME/CFS. Progress: Discussed potential education hub with the Task and Finish Group - to be explored further. DHSC discussed raising awareness of NHS England’s e-learning with relevant professional bodies. The Royal College of General Practitioners, the Chartered Society of Physiotherapy and the Royal College of Occupational Therapists agreed to share and promote NHS England’s e-learning modules. DHSC will continue to reach out to networks including the Royal College of Nursing to promote NHS England’s e-learning modules. NICE has added e-learning to its tools and resources page, with further modules to be added as they become available. DHSC to develop and run a public awareness initiative on ME/CFS, and signpost to e-learning and NICE guidelines as part of the initiative. Timeline and measure of success: Sharing of resources with a wider stakeholder group and a public awareness initiative (by May 2026) are expected to improve both the public and professionals’ understanding of ME/CFS. E-learning to be shared with stakeholders in July 2025. NHS England’s user statistics and feedback on DHSC-led awareness initiative to be monitored and reviewed.