Hope 4 ME & Fibro Northern Ireland - Announcements Page

Hope 4 ME & Fibro Northern Ireland - Announcements PageMonday, October 5th, 2020 at 8:55am

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
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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

*Trial By Error: That Royal Society of Medicine Webinar on Long-Covid https://www.virology.ws/2020/10/01/tria-by-error-royal-society-of-medicine-webinar-on-long-covid/
**Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England" https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3

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Hope 4 ME & Fibro Northern Ireland - Announcements PageSunday, October 4th, 2020 at 10:30pm

Workwell Foundation
Post Exertional Malaise Time Course for ME/CFS

https://twitter.com/4WorkWell/status/1312728263899312128

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Hope 4 ME & Fibro Northern Ireland - Announcements PageThursday, October 1st, 2020 at 8:25pm

https://crowdfund.berkeley.edu/project/22602?fbclid=IwAR0VsM_grQjEL3JAW6A56x02gey7wEVYr6lmBV209rEp3q7bJiiMcS83kjs

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Hope 4 ME & Fibro Northern Ireland - Announcements PageThursday, October 1st, 2020 at 8:17pm

Dr. Stein covered one of our Zoom monthly meetings this year, registration is now open for her online courses.

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Hope 4 ME & Fibro Northern Ireland - Announcements PageSunday, September 27th, 2020 at 5:31pm

German Petition to recognize #ME as a biomedical disease.

Everybody from all over the world can sign:-

bit.ly/2S3r1UU

‘ 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.’

MD

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Hope 4 ME & Fibro NI Retweeted · Ryan Prior @r_prior

Saturday, July 3rd, 2021 at 11:17am
When I set out to write this book on #longcovid, I knew it was going to be a massive story. Just keeps getting bigger. The emerging public health disaster is something the #mecfs community has been documenting for decades. Our response to it is chance to remake healthcare for all https://t.co/uIigBFqSu6

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Hope 4 ME & Fibro NI @hope4mefibroni

Friday, July 2nd, 2021 at 8:28pm
Supporting @doctorswithme https://t.co/kmsUkHq2UU

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Doctors with M.E. @DoctorsWithME
Position Statement: 2021 NICE Guideline Update on Treatment and Management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

https://t.co/vBd8uvdhvi https://t.co/n8bJ7S7iX1

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In reply toEcclesiastical

Friday, July 2nd, 2021 at 8:13am
@Ecclesiastical Yes indeed, paperwork all sent yesterday 😊

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Complaint made to the BBC

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