guidelines

New BACME guidelines for severe ME See post #17 for copy of the 2019 BACME document and post #43 for the 2024 update " The Sussex ME Society works for the nearly 5,000 people in the county affected by Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome(CFS) including many people from the...

CFS/ME National Services Survey Feb 2018 Snap shot audit BACME National Services Workstream Report Published March 2019 https://www.bacme.info/sites/bacme.info/files/BACME CFS ME National services survey March19.pdf

This is the existing advice to doctors for tests for the diagnosis of ME/CFS from a New Zealand health board: 1. Laboratory tests should be limited and dependent on the history and examination.1 Only repeat bloods if there is a good clinical indication. Consider these blood tests ·...

I'm helping with updating the ME/CFS webpage of an online guide for medical professionals. It currently links to a few sources of more detailed (but still concise) information. One is the recently revised CDC information for healthcare providers which is now pretty good. This improved...

Open access at https://onlinelibrary.wiley.com/doi/full/10.1002/capr.12141 Posting this as it has been highlighted in the comments of Spoonseeker's latest blog that the concept expressed in this review is to be used to 'lower the bar' that NICE uses to assess treatments by, and therefore "to...

https://spoonseeker.com/2019/01/21/coming-down-the-line/

#MEAction article with Forward ME Group statement here Take the Survey The survey closes on 31st January 2019. We are counting on the ME community to spread this across all of their networks, both online and in-person. Tag me if any technical problems with survey and I'll make sure they...

Australian Draft Report Seeks Comments In an eagerly awaited draft report, an Australian advisory committee on ME/CFS has called for the development of up-to-date domestic clinical guidelines and an increase in biomedical research into the pathophysiology of the illness. The draft report, which...

This thread is intended for collecting evidence of harms from GET and other therapies that involve increasing activity and/or exercise. Particularly useful would be any research demonstrating either that GET has directly caused harm, or that research on GET that claims no harm has not properly...

I think it would be useful for all of us, and perhaps for the NICE committee members, to gather together resources about severe and very severe ME. This could include research and patients stories that illustrate good and bad practice in care for the very severely affected.

You may wonder what that picture’s doing here and what that title ‘The Vale of Strange’ is about. It should all become clear as this post progresses. But I think you will agree that ‘The Vale of Strange’ sounds like a fair description of where we find ourselves when we’re trying to argue the...

https://www.meaction.net/2018/12/05/all-i-want-for-christmas-is-sciencenotstigma/

NICE documentation NICE guidelines 2007: Link to document 2007 NICE guidelines setup: General comments from stakeholders (CFS/ME consultation draft 29 September – 24 November 2006) Link to document 2018-2020 NICE guidelines revision: Final scope Link to document Consultation on draft scope...

Another good article by Sasha Nimmo: OZ Guidelines – Disability can be defeated through treatment full article here: https://meaustralia.net/2018/11/30/difference-between-australian-chronic-fatigue-syndrome-guidelines-and-me/

"The Improving Access to Psychological Therapies (IAPT) Pathway for People with Long-term Physical Health Conditions and Medically Unexplained Symptoms. Full implementation guidance"...

Been reading through some documents from the previous NICE guideline procedure (Dolphin posted most of them in this thread). They give some insight into the normal course of events and what we could expect to happen next at NICE. I think at the first stage the Guideline Development Group (GDG...

The issue of GET and safety has of course been much discussed, especially regarding the the PACE trial authors' claims to have demonstrated its safety, versus the fact there exists good quality anecdotal evidence to the contrary. There is however an aspect I'm not sure has been broached, and...

I've summarised some information about the appointed NICE committee members in the attached pdf-document. I've focused on committee members with a BPS-bias, and did not delve into the lay members and ME-experts. This thread can be used to challenge or verify the information in the pdf-document...

2018 surveillance of multiple sclerosis in adults: management (NICE guideline CG186) "Recommendation 1.5.5 recommends that mindfulness‑based training, cognitive behavioural therapy or fatigue management are considered for treating MS‑related fatigue. New evidence indicates that these...

I thought it might be useful to collate this information in a thread. Perhaps keep the discussion of the guideline group in general to another thread, such as https://www.s4me.info/threads/nice-guideline-review-a-list-of-appointees-to-the-me-cfs-guideline-committee-has-now-been-published.6197...