House of Commons Library: Myalgic Encephalomyelitis treatment and research. Debate pack. (June 2018)

I've glanced through it. It looks like a librarian has been asked to produce a pack and has cobbled together everything they could find recently in the UK about ME. I mish-mash of good and bad.

I can't imagine any MP's wading through it.

The links at the end include one for ''Association for ME'', which looks like someone's blog. I've glanced at it, and it's management section emphasises the ''general agreement'' that psychological counselling is ''a very important part of ME treatment.'' Oh dear.
 
I have to admit to feeling a sense of dread going through this, but it didn't seem too bad. I feel some sympathy to the authors if they were new to a topic where no-one agrees about anything, and it seems that they responded to the uncertainty by saying as little as possible about ME/CFS or how to treat it, instead just quoting some views from others. Probably the wise response?

There are bits I think could have been clearer, eg I think that 'some' should have been inserted here:

"The PACE trial authors have defended the results of the trial18 and have responded to [some] criticisms in medical journals19 and on the PACE trial website.20"

Ideally they would have gone into some of the details of the problems with PACE, but I guess that if they'd attempted that there's a fair chance that they would have mucked it up.

What does anyone else think? Are my standards too low? That it's not an absolute disaster looks like progress to me.
 
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skimmed through this
Trish said:
I've glanced through it. It looks like a librarian has been asked to produce a pack and has cobbled together everything they could find recently in the UK about ME. I mish-mash of good and bad.

I can't imagine any MP's wading through it.

The links at the end include one for ''Association for ME'', which looks like someone's blog. I've glanced at it, and it's management section emphasises the ''general agreement'' that psychological counselling is ''a very important part of ME treatment.'' Oh dear.
Click to expand...
yes I picked up on that weird website @Trish I think we might have had a thread about this on PR it is like a mock up website, there isnt anything that tells you about the "organisation" Im going to email the HoC to highlight it isnt a genuine ME charity
 
response from HoC researcher
Thank you for taking the time to contact us about the Commons Library debate pack on Myalgic Encephalomyelitis treatment and research. We have decided to remove the link to this website and have republished the document. I include a link to the landing page and updated document below:

https://researchbriefings.parliament.uk/ResearchBriefing/Summary/CDP-2018-0155
 
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