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UK academics view ME differently to US says NICE spokesman

Countrygirl

Senior Member
Messages
5,427
Location
UK
http://www.meassociation.org.uk/201...eedom-of-information-request-24-october-2016/

NICE takes a dim view of foreign work on ME/CFS | Robin Ellis Freedom of Information request | 24 October 2016

Why we are still in the dark ages in the UK.

This article is posted on the MEA site.

NICE are holding back the review of their guidelines on ME/CFS until some time in 2017, saying the evidence to justify earlier reconsideration isn’t strong enough.

“It is not really for the NHS to respond to a report commissioned in another country and not yet examined by its commissioner”, the agency’s director for clinical practice wrote to colleagues as they were assembling their reply to a FoI request from Robin Ellis.

Professor Mark Baker wrote: “We would take seriously the views of the relevant esteemed medical associations in the UK, principally the RCP (Royal College of Physicians) and the RCPsych,(Royal College of Psychiatrists) when looking at reviewing this guidance.

“I am not aware of any reason to do anything before then unless some major new evidence on treatment emerges, and we know that no major studies are in progress”.

The applicant, Mr Ellis, filed three FoI requests earlier this year seeking the release of information held by NICE about the PACE Trial.


This time he wanted to know if NICE allowed its thinking on M.E. to be influenced by overseas research using easily observable symptoms – like testing for post-exertional fatigue using the 48-hour exercise test – the 2015 US Institute of Medicine report on the “devastating severity” of M.E – and the National Institutes of Health report which “retired” the Oxford criteria for CFS believing it to be harmful to people with the illness.

Mr Ellis also pointed to another US agency that had recently determined that CBT and GET were ineffective treatments given the poor outcomes reported all round – including in the PACE Trial.

The Countess wrote to NICE:

“I have to assume that you must agree that patients with ME/CFS are very much the same wherever they are in the world, and that there will be no difference between UK and US patients.

“I also assume that you must agree that very many more resources have been applied to this issue in the US than in the UK. Professor Baker reiterated his belief that there is no evidence that GET makes some patients worse.

“Absence of evidence is no evidence of absence, and there is plenty of evidence from the two major charities in the UK – Action for ME and the ME Association – which have both done major surveys of their members…”

Professor Baker replied to her that NICE will conduct a critique of the American work to consider “whether it adds anything to what we already know”.

He added: “You will be aware that the British academic establishment holds an entirely different view, though not necessarily any better informed.”
 

Hilary

Senior Member
Messages
190
Location
UK
Following the debacle of the PACE trial, can Prof Baker explain exactly why they would take seriously the views of the "esteemed" Royal College of Psychiatrists?? He seems to have his head stuck firmly in the sand.
 

Yogi

Senior Member
Messages
1,132
Here is the "insular" and "jingoistic" Mark Baker profile:

He is completely irresponsible for ignoring the dangers and harms of GET and the scandal of PACE. The charities need to put pressure on him as he is responsible for actual and potential harm of GET for thousands of people.

Surely he would be in breach of GMC guidelines in what he has done as doctors are responsible for preventing harm for patients and he is putting his head in the sand when he as NICE guidelines director is ultimately responsible?

Other doctors simply defer to NICE when they say GET is safe and therefore we have circular logic and no-one taking responsiblity!!




Mark-Baker.jpg


Mark is the Director of the Centre for Guideline (CfG) and is responsible for designing and operating methods and systems to produce clinical guidelines for the NHS. CfG is also responsible for the work of the Medicines and Prescribing Centre including summaries of evidence on new medicines and unlicensed and off-label medicines and the management of the contract for the British National Formulary.

Before joining NICE, Mark was Lead Cancer Clinician at the Leeds Teaching Hospitals and National Clinical Lead for Cancer Peer Review. He has previously worked in transplantation, academic medicine and public health medicine and was Chief Executive of Bradford Teaching Hospitals for six years and a Director of Research and Development.

https://www.nice.org.uk/about/who-we-are/senior-management-team
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
"What do these bloody Colonials know, eh?
Did they go to world renowned GoatBuggery And Old Peculiar College?
Are they the result of ten centuries of inbreeding?
Are they related to everyone on every oversight committee in the country?
No of COURSE not!
They know nothing!"


*he says in posh accent, like some chinless wonder* :p

They know nothing...
Funny thing is, the REAL John Snow, that is DOCTOR John Snow, the guy who linked cholera to the a well in London in the early 1800s, he was attacked and vilified by the medical Establishment for his presumption and "ridiculous claims" because he spoke against the "convectional wisdom" of the wilfully ignorant jackasses who still thought bleeding was the high art of medical "science",
and THAT fact is glossed over when they gush over his break through
 

Hilary

Senior Member
Messages
190
Location
UK
It just seems so arrogant to ignore what is happening in the rest of the world and beyond foolish (contrary to the Hippocratic oath??) to ignore the evidence of the harm that has been caused through use of GET.
 
Messages
2,087
"What do these bloody Colonials know, eh?
Did they go to world renowned GoatBuggery And Old Peculiar College?
Are they the result of ten centuries of inbreeding?
Are they related to everyone on every oversight committee in the country?
No of COURSE not!
They know nothing!"


*he says in posh accent, like some chinless wonder* :p

They know nothing...
Funny thing is, the REAL John Snow, that is DOCTOR John Snow, the guy who linked cholera to the a well in London in the early 1800s, he was attacked and vilified by the medical Establishment for his presumption and "ridiculous claims" because he spoke against the "convectional wisdom" of the wilfully ignorant jackasses who still thought bleeding was the high art of medical "science",
and THAT fact is glossed over when they gush over his break through

Thanks I didnt know that - fascinating !

wikiedia said:
Political controversy[edit]
After the cholera epidemic had subsided, government officials replaced the Broad Street pump handle. They had responded only to the urgent threat posed to the population, and afterward they rejected Snow's theory. To accept his proposal would have meant indirectly accepting the fecal-oral route of disease transmission, which was too unpleasant for most of the public to contemplate.[14]

It wasn't until 1866 that William Farr, one of Snow's chief opponents, realized the validity of his diagnosis when investigating another outbreak of cholera at Bromley by Bow and issued immediate orders that unboiled water was not to be drunk.[15]

Farr denied Snow's explanation of how exactly the contaminated water spread cholera, although he did accept that water had a role in the spread of the illness. In fact, some of Farr's statistical data that he collected helped promote John Snow's views.[16]

Public health officials recognise the political struggles in which reformers have often become entangled.[17] During the Annual Pumphandle Lecture in England, members of the John Snow Society remove and replace a pump handle to symbolise the continuing challenges for advances in public health.[18]
 

Deepwater

Senior Member
Messages
208
Ashamed - and scared - to be English growing old in this country with this disease.
One could be forgiven for suspecting that ME denial is still a matter of fixed government/ Establishment policy rather than simply silly-buggery. Prevent funding for proper biomedical research (and if pressed pretend to fund a bit but make sure it's rubbish) and refuse to accept the results of any research conducted overseas. It's a watertight recipe for continuing to support the hysteria myth for ever. Accidental? pull the other leg, please.
 
Messages
3,263
Vive la Grande Bretagne! I recommend that this policy - of prioritising UK expertise over that of foreigners - be immediately accepted in all domains.

Policy to have immediate effect in the areas of wine-making, food sales and restaurants, central heating, the car manufacturing industry, customer service practices, and of course plumbing (particularly shower attachments).
 

Forbin

Senior Member
Messages
966
...DOCTOR John Snow, the guy who linked cholera to the a well in London in the early 1800s... was attacked and vilified by the medical Establishment for his presumption and "ridiculous claims" because he spoke against the "convectional wisdom"...

It's interesting that you mention John Snow, because I just realized that Dr. Ian Lipkin is the John Snow Professor of Epidemiology at Columbia University's Mailman School of Public Health.

I figure it's got to be the same John Snow, since (as I learned following up on @SilverbladeTE's post) he is considered a "father of epidemiology," due to his work on the London cholera epidemics of the 1850's.

It feels appropriate that Lipkin holds a chair named for someone who fought against the entrenched view.
 
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