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From the study protocol: "The social problems include delays in organising post-discharge care arrangements, family members’ expectations or concerns about where the patient will go when leaving hospital, and miscommunications and conflicts about discharge planning within the clinical team...

Only an update to the published trial protocol. Study paper still seems not published yet. Study website: https://oxfordpsychologicalmedicine.org/thehomestudy/ Edited to add: Maybe the title of this forum thread is misleading regarding CBT? Couldn't find any hint that patients will be...

Interestingly, it's not PACE they reference but this study from 1996: https://www.bmj.com/content/312/7022/22 Also interesting to see all the responses and letters thoroughly criticizing the study. Edit: cross-posted with Peter

Now found it -- Alan Carson replying to some pushback on his response to the NIH's Walter J. Koroshetz: Alan Carson on Twitter: "@Sean_WRLDS @NINDSdirector I think it more complex than that particularly for alterations in regional blood glos but even structural change"...

Only yesterday saw this cited on Twitter -- now can't find it anymore but if I remember rightly it was by some FND eminence. I think criticism of this paper and of the authors' reply deserves to be included in any (p)rebuttal of cognitive behavorists' claims about what their research allegedly...

A comment and IQWiG's reply on that issue ( posts immediately above) on Mastodon: https://wisskomm.social/@smu@digitalcourage.social/110373082280112004 Anyone up to provide a translation? (Sorry not able myself ATM)

ME/CFS Research Foundation on Twitter: "We will publish the #MECFS_Symposium2023 as well as the #MECFS Conference videos on our website as soon as possible. Follow us and/or subscribe to our newsletter to get latest updates": https://t.co/wMGqYPALUg edit: Link to website in English language

My hope is that someday in the nearer future S4ME could invite German charities to co-work or at least discuss on establishing some standards for a) what's good clinical trial methodology (including endpoints) for different trial designs (blinded drug trials vs unblindable therapist-delivered...

A snippet of how IQWiG interpreted and dismissed some comments on the issues about subjective endpoints in unblinded trials, discrepancy between subjective and objective endpoints, what patient-reevant and validated endpoints are etc. IQWiG Report, p.254-255 / deepl translate: "In the...

There's another website with some additional info about the study referred to in the report (see Hutan's posts above). Google translate link here. See my quote above: "An overall concept of diverse treatment approaches is being developed and launched. This concept includes behavioral and...

Adding to the above: Seems not to be an actual trial protocol, just an entry in the trial registry -- e.g. description of control group is missing -- but see the other link & quote above. And from the entry in the trial registry: Allocation is non-randomized. edit: cross-posted with Hutan

Link to trial protocol: https://drks.de/search/en/trial/DRKS00028115 see post above: Edit: From the trial protocol: Primary outcome: health-related quality of life (SF-36) at 12 months Secondary outcome: ability to work (able to work yes/no, sick days); health status (Bell scale, SF-36)...

https://innovationsfonds.g-ba.de/projekte/neue-versorgungsformen/cfs-care-versorgungskonzept-fuer-patienten-mit-chronischem-fatigue-syndrom-myalgischer-enzephalomyelitis-cfs-me.427 Not sure what to think about this: "An overall concept of diverse treatment approaches is being developed and...

Thanks Andy. Haven't even been able to listen to it yet -- just expect that it's as instructive as Adam's rebuttal of Fiona Fox's inaccuracies about research on ME/CFS and about patient activism in her recent memoir. At least just recalled that Brian Hughes posted a prebuttal of the announced...

Yes, that's correct. Also:

Do we have a transcript of this? Turns out that could be useful for any comment on the freshly published IQWiG report on ME/CFS. (see News from Germany thread) Apologies, now too unwell to link and explain in more detail: The report does include a summary of recommendations by other...

Related 'Health Information' for people with ME/CFS: https://www.gesundheitsinformation.de/mecfs-myalgische-enzephalomyelitis-chronisches-fatigue-syndrom.html Google translate link here.

IQWiG just have published their report on ME/CFS. Press release (German) here. From the press release / google translate: "The information from the statements and an update of the literature research have led to changes in two areas in particular: " On the one hand, the estimate of the...

Michael A Osborne on Twitter: "This is Alem Matthees, from my home town of Perth. Alem has ME/CFS, and he filed the FOI request that busted open the horrific PACE trial, the study that falsely claimed exercise as a treatment. That fight came at great cost to Alem's health—he now depends on...

Sheffield ME & Fibromyalgia Group on Twitter: "Join us online/in person at @CircleSheffield on Friday May 12th for our #WorldMEDay celebration! 12.30 Annual General Meeting 1.15 Free Lunch 2pm adambeyoncelowe [@twitter] performance 2.30 NICE Guidelines interview Q&A SIGN UP...