harms

Hi all, it came up in another thread that it would be good to have a one-stop shop of all papers or evidence examining the efficacy or risks of CBT/GET for people with ME or LC (LC-ME preferred but my guess is that no relevant studies taking into account PEM specifically will have been done yet...

Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes https://www.meaction.net/wp-content/uploads/2019/04/NICE-Patient-Survey-Outcomes-CBT-and-GET-Oxford-Brookes-Full-Report-03.04.19.pdf FINAL REPORT...

https://bnu.repository.guildhe.ac.uk/id/eprint/9823/1/Pheby, Derek Risk factors for severe ME & CFS.pdf 2009 paper Derek Pheby and Lisa Saffron Abstract ME/CFS is a serious illness affecting several hundred thousand British people. Some 25% of people with ME/CFS may be severely ill (housebound...

Full title: Harms of exercise training in patients with cancer undergoing systemic treatment: a systematic review and meta-analysis of published and unpublished controlled trials Background: Exercise is recommended for people with cancer. The aim of this study was to evaluate the harms of...

“I still can’t forget those words”: mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses Sloan, Melanie; Bosley, Michael; Gordon, Caroline; Pollak, Thomas A; Mann, Farhana; Massou, Efthalia; Morris, Stephen; Holloway, Lynn; Harwood...

What can we do to get deterioraters such as myself a suitable diagnosis that fully reflects their symptoms? It's become clear to me that there's no room for permanent damage being believed under an ME diagnosis, not even our own fact sheet says this exists. It all makes me feel very invalidated...

Mindfulness-Based Stress Reduction vs Escitalopram for the Treatment of Adults With Anxiety Disorders A Randomized Clinical Trial https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2798510 Abstract Importance: Anxiety disorders are common, highly distressing, and impairing...

Background: Post-Exertional Malaise (PEM) is considered a hallmark characteristic of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This may also apply to subgroups of patients with long COVID induced ME/CFS. However, it is uncertain to what extent PEM is acknowledged in routine...

Abstract Objective We examine deterioration in psychotherapies, as reported in the recent evaluation of the Australian Medicare Better Access initiative. Conclusion A focus on patients who experience poor clinical outcomes helps programs minimise harm and improve quality of care. The Better...

It has occurred to me that it might be useful to collect testimonies of people like myself who accepted a psychosomatic theory of their disease, took their doctor's advice and worsened. In non emotive language as far as possible, simply describing what advice one was given and the degree to...

Some time ago there was a survey sent to CFS clinics in the UK asking if they followed up dropout patients to see if they dropped out because harmed, and over 50% of those replying said no, so no wonder no harm recorded. Has anyone a link to this please? I had one but cant access it on old PC.

Free full text: https://www.opastpublishers.com/open-access-articles/treatment-harms-to-patients-with-myalgic-encephalomyelitischronic-fatigue-syndrome.pdf ISSN: 2640-4133 DOI: 10.33140/ABBSR.06.01.01 Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome David...

The Pfizer press release reports that protection is achieved 28 days after initiation of the first dose of vaccine. Whereas you can develop covid within a few days of exposure, so the virus wins that race...

There's a thread dating from four years ago about GET and whether there is good evidence it is actually harmful. I was wondering whether there has been any new evidence since then. (old thread is here...

Holistic or harmful? Examining socio-structural factors in the biopsychosocial model of chronic illness, ‘medically unexplained symptoms’ and disability Joanne Hunt Abstract A particular application of the biopsychosocial model is associated in peer-reviewed literature and patient testimony...

Abstract here Links to related MYRIAD papers here https://www.bbc.co.uk/news/health-62126567

Abstract In 2 cases of men aged 26 and 55 respectively we illustrate the complexity of MUS patients since in both cases a somatic diagnosis was missed. The first patient presented with an inability to walk and persistent pain. Because of his symptoms he lost his job, had depressive moods and...

This case may seem remote from ME, but it may have general implications for patients who suffer harm when doctors do not follow best practice. From (£) https://www.thetimes.co.uk/article/evie-toombes-showjumper-with-spina-bifida-wins-millions-after-suing-gp-over-her-birth-h66cns30g

Seems someone got in there first... :wink: https://petition.parliament.uk/petitions/601237

https://www.change.org/p/department-of-health-and-social-care-we-demand-the-creation-of-a-new-mechanism-by-which-m-e-c-f-s-patients-can-report-harms-ab215021-5d66-4f72-9ba2-06a633f298f3?source_location=topic_page