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In Hilda's November 2023 update on the Cochrane website, she said this: So they have a history of taking a year to consider a complaint, and describe it as a confidential process. I think we can guess who might have been involved in making that complaint. What I'd like to know is whether the...

We have asked them multiple questions multiple times on things that should be straightforward to answer, and for which there can be no possible justification for refusing to answer. We don't even get any acknowledgement that we've asked any questions. It's just solid stonewalling.

The latest idiocy from Sir Simon. LBC news Mental health isn’t the problem—the system is: Natasha Devon on Sir Simon Wesley’s controversial comments ... The article goes on to point out that many services for young people including adolescent mental health services, youth clubs, sports...

The latest, and briefest, communication from Cochrane: "Following up on your complaint about the 2019 Cochrane review, "Exercise therapy for Chronic Fatigue Syndrome" by Larun et al., we are still investigating and we will update you as soon as we can. Kind regards, Cochrane Complaints" Also...

I've posted a draft letter to AfME and will welcome feedback in the next few days: https://www.s4me.info/threads/draft-letter-to-afme-about-their-care-and-support-plan-document-by-peter-gladwell.39853/

I'm in the process of drafting a letter. I have just looked at the survey AfME have provided for feedback. https://forms.gle/jVrwfmEWWd3yjA6g6 It's heavily skewed not to allow criticisms of the content or purpose of the so called care and support plan. Here are the questions: 1. What about...

Here's an example of Gladwell's research on ME/CFS where he used patients from his own clinic, and showed little understanding of the effects of activities on pwME. Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with ME/CFS...

I think a key problem with the way Gladwell carries out research and invites patient participation in it is that he uses his own patients from his clinic as the participants. As a convenient group of willing patients to work with, ones from your own recent group ME/CFS clinic's 'treatment' must...

I intend to draft a letter in the next couple of days including key points raised on this thread. If I manage to put something together, I'll post a copy here before sending it. If others want to write too, don't let me stop you. There is also the AfME survey you can submit to register your...

I think that's a really important point. Who is going to read this? Nobody. Pretending such an unwieldy document written by a pwME will be useful in all these other situations is cloud cuckoo land. Which is why any care and support plan has to focus on recording planned actions by named...

That's a good point, in my sample plan I included providing a wearable monitor and checking progress in 3 months, that could be Visible or similar, and data included in the person's records. I am assuming the clinician keep records of things like weight, BMI, wearable summary data, FUNCAP or...

Don't need to. It's straight from the NICE guidelines section on care plans, as I linked in the post above my sample plan, with the advantage that each section can be linked to the relevant section of the guideline. This means the clinician has a direct link to the detail of NICE under each...

My interpretation of that is a one page document that lists the current situation and needs and actions to be taken by clinician and patient, for example for a hypothetical patient called Fred: Name Fred... Assigned clinician coordinator Clinician X (eg specialist nurse) information and...

This is what the NICE guidelines say about Care and Support Plans 1.5 Assessment and care and support planning by an ME/CFS specialist team Also see the section on care for people with severe or very severe ME/CFS. 1.5.1 Carry out and record a holistic assessment to confirm the person's...

I think it's better to ask, what evidence is there to support this protocol? We have not seen any clinical trial research to support it, nor, as far as I know, even any medically supervised and assessed published case studies. There have been decades of people inventing treatment protocols with...

And Gladwell seems to be the dominant force. He's also on the Cochrane Independent Advisory Group for the new exercise review, and writes materials for AfME.

The Anomalies paper published in 2023 by White et al, and clearly led by White who was the leader on GET in PACE, tries to argue against NICE's removal of GET...

Given that symptoms are what a person experiences and reports, they can say the symptoms are real, but at the same time say the experience is an exaggeration of normal healthy aches and tiredness due to distorted perception of normal sensations as abnormal, and we report effort as abnormal due...

I had a quick look at the survey Action for ME have set up for feedback. It's far too brief and has leading questions. I feel a letter coming on. I'm sad AfME are pushing this. I think it reflects BACME's lack of understanding of ME/CFS, and of scientific rigor. It's all very well saying it...

Thank you @Yann04. That sounds like a valuable resource.