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michaeltikus.bsky.social
@michaeltikus.bsky.social
890 followers 490 following 5 posts
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Reposted
drelke.bsky.social
‚in June 2025 Elsevier published its 11th edition of Kumar and Clark's "Clinical Medicine". To widespread disbelief, ME was firmly sited in the "General Hospital Psychiatry" section‘

…and they‘re not going to change it.

Read this.

#ME

www.margaretwilliams.me/2025/is-else...
www.margaretwilliams.me
September 17, 2025 at 2:09 PM
michaeltikus.bsky.social
@lizneeley.bsky.social have you seen www.trumpactiontracker.info?utm_source=s... ?
www.trumpactiontracker.info
July 21, 2025 at 9:04 PM
Reposted
kacheston.bsky.social
I've submitted a rapid response to this BMJ Opinion piece - speaking from my dual experience as both researcher and 'recovered ME/CFS patient' (not a term I'd choose to employ).
Beliefs about ME/CFS can shape lives Dear Editor, Last year, I completed a Wellcome-funded PhD exploring women’s experiences of ‘medically unexplained symptoms’ (MUS), a category into which ME/CFS is typically subsumed. During my PhD, I had the privilege of interviewing women living with illnesses including ME/CFS. My interest in ME/CFS is both professional and personal. In September 2008, around my fifteenth birthday, I caught a ‘flu-like virus. My health deteriorated sharply and I was diagnosed with ME/CFS in January 2009; my teenage years and early twenties were shaped by different kinds of formative experiences. In February 2016, I caught another ‘flu-like virus. To my intense and enduring surprise, my ME/CFS symptoms disappeared. They have not returned. While Dr Miller and colleagues argue that ‘[r]eframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS’,[1] my recovery did not involve any of these factors. It simply happened. My health has changed drastically, but my beliefs about the illness and its causes have remained steadfast since 2008. In 2013, after four years unwell and a return to severe illness, I came to believe that I would not recover. This belief did not harm my mental wellbeing, contra to the claims of Dr Miller and colleagues.[1] What did harm my mental wellbeing - to such a significant extent that I have since needed professional support to move forwards - were the beliefs that others held about me and my illness: that I could get better, if only I reframed my own thoughts, or did more exercise, or exercised in a different way, or stopped focusing on my symptoms. In short, the belief that there was a ‘path’ to recovery (as Dr Miller and colleagues put it),[1] if only I chose to search for it. The National Institute for Health and Care Excellence (NICE) no longer recommends therapies based on deconditioning and exercise avoidance theories as perpetuating ME/CFS,[2] recognisin… References 1. Miller, A; Symington, F; Garner, P; Pedersen, M. Patients with severe ME/CFS need hope and expert multidisciplinary care. BMJ 2025;389:r977. doi.org/10.1136/bmj.r977 2. National Institute for Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. 29 Oct 2021. https://www.nice.org.uk/guidance/ng206 3. Geraghty, K; Hann, M; Kurtev, S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. J Health Psychol 2019;24:1318-1333. doi:10.1177/1359105317726152 4. Vink, M; Vink-Niese, A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open 2018;5:2055102918805187. doi:10.1177/2055102918805187 5. Kindlon, T. Do graded activity therapies cause harm in chronic fatigue syndrome? J Health Psychol 2017;22:1146-1154. doi:10.1177/1359105317697323 6. Geraghty, K; Esmail, A. Chronic fatigue syndrome: Is the biopsychosocial model responsible for patient dissatisfaction and harm? Br J Gen Pract 2016;66:437-438. doi:10.3399/bjgp16X686473 7. Cheston, K. (Dis)respect and shame in the context of ‘medically unexplained’ illness. J Eval Clin Pract 2022;28:909–916. doi:10.1111/jep.13740 8. Sharpe, M. Cognitive Behaviour Therapy for Functional Somatic Complaints: The Example ofChronic Fatigue Syndrome. Psychosomatics 1997;38:356-362. doi.org/10.1016/S0033-3182(97)71443-9
May 15, 2025 at 4:45 PM
Reposted
drelke.bsky.social
Are there any more GPs with Long Covid out there who would be interested in reading my article in the British Journal of General Practice (BJGPlife) and maybe comment on it?

#LongCovid

bjgplife.com/suzanne-osul...
April 5, 2025 at 2:03 PM
Reposted
karenlhargrave.bsky.social
We are sad to announce that #ThereForME has suspended our collaboration with the ME Association.

We feel that concerns from the community must be heard. The door remains open to continue our collaboration once action is taken and concerns addressed.

More here 👇
We are very sad to announce that the #ThereForME campaign has suspended our collaboration with the ME Association. Like others in the ME community, we have deep concerns about a recent editorial published by the ME Association and authored by the ME Association’s Chairman (‘Animals need to move’). We wrote to the ME Association today expressing concerns about the editorial and asking for an update on the actions that the ME Association would be taking to address them. We did not feel that the response we received was adequate and so we have taken the decision to suspend our collaboration with immediate effect. We are very proud of how we have managed to bring the ME and Long Covid communities together under a shared advocacy message since launching the campaign four months ago. We believe our community is strongest when we can work together and so this is not a decision that we have taken lightly. However, we are also very grateful for the trust we have built with the ME community. We therefore feel that we cannot in good conscience continue our collaboration with the ME Association until the very valid concerns from the community have been sufficiently addressed. We have made clear to the ME Association the actions we believe are necessary from their side in order to resume our collaboration. The door remains open to continue working together once we feel sufficient action has been taken. We very much hope that this will be the case. In the meantime, we will be focusing our time and energy on what we feel our campaign does best: speaking up for people with ME and Long Covid, who will always be at the heart of our campaign. Karen, Emma and Oonagh
November 18, 2024 at 8:43 PM