Thread by @TomKindlon

Press Release from NICE about its new draft #MECFS guidelines that are out for consultation

meresearch.org.uk/nice-guideline…

“The draft guideline also highlights the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind”

#CFS

1/n

2/n
Draft NICE guidance “recognizes that #MECFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms,particularly where there is the potential for an intervention to benefit some people but cause harm in others”

3/n
“Because of harms reported by people with #MECFS + the committee’s own experience of the effects when people exceed their energy limits...any programme based on fixed incremental increases in physical activity or exercise eg GET should not be offered for treatment of ME/#CFS”

4/n
“Paul Chrisp, director of the Centre for Guidelines at NICE, said:
#MECFS can cause profound, long-term illness & disability, and much of the distress surrounding it is caused by difficulties in recognising, acknowledging and accepting the condition and its impact”

#MyalgicE

5/n
“The [ME/CFS NICE guidelines] committee weren’t able to make any recommendations for treatments because of a lack of evidence of effectiveness”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #NeuroME #PWME #MedTwitter #MEeps #CFSME #SEID #MyalgicE #PVFS

6/n
“Instead [NICE] emphasises the importance of a personalised management plan for areas such as energy management (including the importance of rest & the concept of an energy envelope), the treatment of specific symptoms, and guidance on managing flares & exacerbations”

#MEcfs

7/n
Baroness Finlay: “Those with #MECFS need to be listened to, understood and supported to adapt their lives. Many have suffered stigmatisation and prejudicial attitudes in the past; this guideline should ensure they receive more empathetic care”

#CFS #MyalgicE #PwME #MEeps

8/n
“ME/CFS patients have been voicing their concerns about #gradedexercisetherapy for a long time, and the evidence presented to the [#MECFS NICE guidelines] committee supported these concerns.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #GradedExercise #PwME

9/n
“One of the key points in the draft [NICE] guideline is that exercise is not a treatment or cure for ME/#CFS and should not be presumed to be safe for those with this disabling and often neglected illness.”

#MEcfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE

10/n
“The approach [the draft NICE #MEcfs guidelines] recommends is a pragmatic one which allows patients to self-manage themselves, within their daily limits, while using readily available interventions to address the most serious of their symptoms first.”

#CFS #MyalgicE #PwMEs

11/n
From NICE press release:
“This draft guideline reinforces the legitimacy of this biomedical disease and aims to reduce the disbelief and stigma felt by people with ME/CFS.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #MyalgicE #PwME #MyE

12/n
From NICE press release:
“The draft guideline highlights post-exertional symptom exacerbation, including debilitating fatigue, as core to ME/#CFS, so critically it recommends that graded exercise therapy should not be offered as a treatment”

#MEcfs #ChronicFatigueSyndrome

13/n
[The draft NICE ME/CFS guidelines] “acknowledges the profound needs of people with severe ME/#CFS and their carers whose lives are hugely impacted by #MECFS, and states that this unique patient group should be treated with respect, dignity, and empathy”

#SevereME #SevereCFS