Dr Alastair Miller's misleading claims about effectiveness of the English NHS (rehab) ME/CFS clinics at a Royal Society of Medicine webinar in Sept 2020
As Dr David Tuller reported*, the Royal Society of Medicine conducted an online webinar recently called “Long COVID: Understanding the shadow of the virus.”
Among others, it featured Dr Alastair Miller (an infectious disease expert from Liverpool who used to run a local ME/CFS clinic) who claimed with regard to ME/CFS:
"And from our results, which are pretty much in line with PACE and all the other centers that are using these therapies, we reckoned that about one third of our patients made a complete recovery and go back to a pre-morbid existence, about a third made an improvement but still had some symptoms, and about a third did not recover.”
Fortunately, we don't have to depend on Dr Miller's claims: we actually have a published paper on the English NHS (rehab) ME/CFS clinics**.
A quick review of the data shows that Dr Miller's claims don't add up:
(From table 3)
At 1 year after initial assessment
I have been able to return to work or increase my hours: 18.0%
I have stopped working or reduced my hours: 34.8%
(From Table 6)
At 2- to 5-year follow-up
I have been able to return to work or increase my hours: 23.7%
I have stopped working or reduced my hours: 34.9%
(From table 4)
At 1 year after initial assessment
Do you think that you are still suffering from CFS/ME? No: 2.8% Uncertain: 10%
Note, that "no" and "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis; it doesn't mean they are fully healthy
(From table 6)
Do you think that you are still suffering from CFS/ME?
At 2 years. No: 5.0% Uncertain: 8.8%
At 3 years: No: 2.4% Uncertain: 7.2%
At 4 years: No: 6.6% Uncertain: 11.3%
At 5 years: No: 8.2% Uncertain: 9.2%
Again, note that "no" and "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis; it doesn't mean they are fully healthy
Pathways to Improvement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Environmental Sensitivities is a step-by-step MD guided live, online program to help you feel and live better.
German Petition to recognize #ME as a biomedical disease.
Everybody from all over the world can sign:-
‘ Unfortunately, there is no medical care for the approximately 240,000 people suffering from Myalgic Encephalomyelitis (ME) in Germany.
Currently, there is only a specialized contact point at the Charité Berlin, but due to the large number of patients, only patients from Berlin/Brandenburg can be diagnosed there! Important: they only diagnose, unfortunately the patient cannot expect a helpful therapy.
The contact point of Prof. Behrends at the Munich Clinic Schwabing is only responsible for young people.
That means: there are currently no contact points for most patients in Germany. The situation is therefore catastrophic for those affected, which also explains why many patients are wrongly diagnosed with burnout/depression, resulting in harmful therapy attempts that do not help the patient but allow the disease to progress.’
Tuesday, April 20th, 2021 at 4:23am
I do not like being on the patient side of healthcare, particularly w #LongCovid. But it’s teaching me abt the insanity people must navigate to be heard, understood, believed, and get appropriate care. And it’s showing me how resistant to change we clinicians can be.
Monday, April 19th, 2021 at 9:07pm
Sincere condolences to Grainne and the family circle of the late Derek Peters.
Derek was a longtime campaigner and #ME advocate who formed the charity ‘Northern Ireland Campaign for ME/CFS Health‘ care. His dedication and decades of work will never be forgotten. https://t.co/pLUqRo13cT