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Today, @NICEComms granted #LongCovid patients a dignity that #pwme (people with #MECFS) have fought for and been denied by NICE for years. 1/ https://twitter.com/bmj_latest/status/1285542552700178438
BMJ’s highly misleading article above makes it sound like post-exertional malaise (PEM) - the *hallmark symptom of #MECFS* - is somehow unique to #LongCovid patients. 2/
Why PEM in #LongCovid means graded exercise therapy (GET) is contraindicated, but PEM in #MECFS does not, is not explained. In fact, if the BMJ article was somebody’s first exposure to this topic, they would think that #MECFS patients don’t have PEM. 3/
A quick look at the CDC website resolves that question - though appealing to one public health authority to debunk another isn’t a great rhetorical technique. Instead, I leave you the following to chew on: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ 4/
tl;dr of the above is that the NICE recommendation of GET for #MECFS - spurred on by the bogus PACE trial of 2011 - is one of the grievous wounds to our community that has rendered some #pwme permanently housebound or bedbound. 5/
And yet somehow, when a new cohort of patients come forward with many of the same symptoms as us, @NICEComms suddenly has a change in tune - but not toward all of us. 6/
I’ve heard some fears expressed in the #MECFS community that diagnostic labels will continue to silo us, and #LongCovid patients will get services and research that #pwme will not be able to access via our diagnosis. 7/
I commend @NICEComms for starting to get it right, and I hope they’ll make it all the way right and change their guideline for all #pwme. However... 8/
I strongly hope that this new guideline is not a glimpse into a divided future. We have to stand together - across diagnoses, across labels, across the causes of our onset - to demand better care for all. 9/9
