New Video: NICE pause ME/CFS guideline

https://www.youtube.com/watch?v=4IxIxF3GJFo

 

NICE paused the publication of a new ME/CFS guideline the day before it was due after pressure from Royal Colleges and NHS England [1].

The hallmark symptom of ME/CFS is that even minimal exertion can cause a flare in symptoms and a reduction in physical capability (a crash) that can last for days, weeks or even months. The 2007 guidelines "do not fit" with patient experience and "perpetuated my misunderstanding" of ME/CFS by recommending Graded Exercise and CBT [2].

Graded Exercise not only fails to improve function but is detrimental to the health of ME/CFS patients and should not be recommended [3]. Patient surveys consistently report that Graded Exercise makes over 50% of patients worse [4]. Some patients become significantly more disabled. The US and a number of other governments have withdrawn Graded Exercise as the treatment
of choice for patients with ME/CFS [5].

After an extensive 3 year review, NICE were going to drop Graded Exercise because of improved standards for evidence and concerns about harm [6]. The evidence review included the 'definitive' £5M PACE trial which was debunked after a Freedom of Information request [7,8].

"These treatments do not work, and worse, it appears they cause considerable harm. There is clearly a number of healthcare professionals who can’t admit they’ve got it wrong and can’t cope with change." - Professor Jonathan Edwards - NICE Expert Witness [9].

REFERENCES
[1] https://www.meaction.net/2021/08/17/fury-as-nice-cancels-publication-of-finalised-me-cfs-guideline/
[2] https://www.rcplondon.ac.uk/news/do-you-really-believe-me
[3] https://workwellfoundation.org/wp-c...T-Letter-to-Health-Care-Providers-v4-30-2.pdf
[4] https://meassociation.org.uk/2017/0...e-least-negative-reactions-02-september-2017/
[5] https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
[6] https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline
[7] https://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html
[8] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863477/
[9] https://www.dailymail.co.uk/health/...herapy-chronic-fatigue-patients-banished.html

 

Supporting thread about PEM, diagi criteria and downgrading evidence.

https://twitter.com/user/status/1450073367424352258

 

Supporting thread about PACE and blinding

https://twitter.com/user/status/1450073369324527618

 

Another brilliant video. These are so much appreciated especially with all the detailed references, evidence and transcripts. Thank you

 

Thanks @Fizzlou

 

Thanks @Trish

 

Shared

 

Thanks Peter

 

Excellent Adam, thank you x

 

Thanks Daisy

 

Excellent! Excellent! Excellent!
Thank you!

 

Thanks willow