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

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More from @TomKindlon

9 Nov
Misleading about mainstream CBT for #MECFS: the manuals show it's about reversing symptoms & impairments, & claim people should be able to recover with CBT. The results from trials are not particularly exciting esp. with regard to objective +/or long-term outcome measures

#CFS
I'm not convinced by this claim either "Unsurprisingly, people experiencing many symptoms like this feel anxiety, which in turn can drive more physical symptoms.”

But otherwise could have been a lot worse.

#PostViralFatigueSyndrome #PostViralSyndrome #PVFS #MEcfs #CFS #MyalgicE
"ME/CFS has been continually written off–even by some in medicine–as a “made-up” or “psychological” issue because biological triggers for the issues have yet to be found. This can see patients maligned rather than supported" Cohort studies have shown it often follows infections
Read 4 tweets
8 Nov
[Thread]
“Doctors examining possible link between #chronicfatiguesyndrome and #COVID19: For many, chronic fatigue syndrome develops after a viral infection” by Dr Danielle Weitzer and Dr Christie Richardson

abcnews.go.com/Health/doctors…

#LongCovid #MEcfs #CFS #PostCovid #PVFS

1/n
2/n
“By this point, many people can identify symptoms of #COVID19 -- fever, fatigue, shortness of breath -- but fewer know that those can occur after a successful recovery* and closely resemble another illness: #chronicfatiguesyndrome

*I dislike using “recovery” in this way
3/n
“‘About 75 to 80% of #chronicfatiguesyndrome cases are post-viral in nature,’ estimated Dr. Mark VanNess, ‘The viral infection and following immune response are precipitating causes for long-term symptoms.’”

#LongCovid #PostViralSyndrome #PostViralFatigueSyndrome #MEcfs #CFS
Read 6 tweets
19 Aug
[Thread]
"#LongHaulers Are Redefining #Covid_19: Without understanding the lingering illness that some patients experience, we can’t understand the #pandemic."

In-depth reporting by @edyong209.
Include some discussion of #MEcfs

theatlantic.com/health/archive…

#CFS #MyalgicE #PwME
1/n
2/n
“[#Covid] #Longhaulers had to set up their own support groups. They had to start running their own research projects. They formed alliances with people who have similar illnesses, such as dysautonomia & #myalgicencephalomyelitis aka #chronicfatiguesyndrome
#Covid19 #Covid_19
3/n
“More than 90 percent of [#Covid] #longhaulers also have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,”
Read 9 tweets
27 Jul
2/n

“The ME/CFS community with its knowledgebase, its research findings, its doctors, advocates and the patients who have been through it all, has much to contribute to the long haulers.”

#LongCovid #COVIDー19 #longneglected #LonghaulersUnite #MyalgicEncephalomyelitis
3/n

“You should know – and may already very well know – that many doctors have reacted to this kind of illness by denying it, by downplaying it, or by calling it psychological.”

#longhaulers #LongCovid #COVIDー19 #COVID19 #COVID #MEcfs #CFS #MyalgicE #ChronicFatigueSyndrome
Read 13 tweets
20 Dec 19
Free full text:
"Differentiating Psychosomatic, Somatopsychic, Multisystem Illnesses and Medical Uncertainty" (Oct 2019)
mdpi.com/2227-9032/7/4/…

Includes discussion of ME/CFS

Summary from @MEAssociation
meassociation.org.uk/2019/10/mea-su…

#MUS #FND #MEcfs #CFS #MyalgicE #PwME #MyE
Read 10 tweets

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