Help me find some facts! :)

I'm updating some of our static pages and I need some sources for some facts. I'll need more as I go along so I expect I'll post more questions on this thread as things develop.

Can anyone provide me with:

• a link to the source for the statement that 25% of PWME are bedbound/housebound
• a link to an official UK (DoH/DWP/NHS) statement that ME/CFS is an organic (non-psychological) disease
• sources for the latest figures on prevalence in the UK and worldwide (I have US figures)

Thanks!

 

From 2011

Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care
Luis C Nacul12*, Eliana M Lacerda1, Derek Pheby3, Peter Campion4, Mariam Molokhia5, Shagufta Fayyaz1, Jose CDC Leite6, Fiona Poland6, Amanda Howe6 and Maria L Drachler6

This study estimates minimum prevalence rates as 0.11% for CCC, 0.19% for CDC and 0.03% for ECD (Epidemiological Case Definition, whatever that is)

Edited: I mistyped the CCC prevalence rate as 0.1%. I've corrected the figure above.

 

At your service. A statement from a health minister in the Lords from 2008:

http://www.meassociation.org.uk/2008/06/in-the-house-of-lords-yesterday/

Note: this dates back to the last Labour government. I don't think that it's come up since.

 

The 25% statistic is like a rabbit hole - everytime you follow it, it just takes you to someone else quoting it. If I keep going I'll probably run it down to an old wives tale from the 18th century.

 

Sorry - I meant a link to a document stating it, rather than a verbal thing.

 

I asked this question a year or two ago (and have googled on myself and can't find it for the life of me) - someone answered and came up with (I think) a DoH source which itself was vague in its basis but did seem likely to be the original source.

 

FWIW, I think that 25% with severe ME is probably an overestimate. I think that the more severely affected you are, the more likely you are to have a diagnosis. At the milder end of the scale, it might be possible for you to muck along and stay (relatively) lucky.

 

Best I can do. A statement in the Lords is basically government policy though.

 

Thanks!

 

Apologies in advance. This is from an April 2009 DWP Training Manual demonstrating exactly what you are not looking for

https://www.whatdotheyknow.com/request/49426/response/123990/attach/html/5/Chronic Fatigue MED S2 CMEP 0017 Mod 6 V4.doc.html

 

I'm sorry. I'll be very surprised if you find what you are looking for. At best, it'll be about as equivocal as the document I found.

 

I've seen a definitive DWP or something statement that ME/CFS is legit. I think someone in the Amazon debacle on the 'all in your minds, you MUP(PET)S' book might have included it in a comment. I've seen it recently.

 

http://www.publications.parliament.uk/pa/ld200708/ldhansrd/text/80602-0001.htm

and more along the same lines here

http://www.investinme.org/Article-704 UK-Government Position on ME.htm

 

@Sasha Still not what you are looking for but getting better. Not definitive - still a mish mash - but I fear I may be looking in the wrong place.

This is the updated version (April 2015) of the document I linked to before. This is a Health Assessment Advisory Service doc so still DWP. It even mentions SEID.

http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/News/dwp-haas-mecfs.pdf

A few extracts

Also of interest

 

Still no link but I've previously seen the 25% figure claim as the proportion of pwME being housebound or bedbound at some point in their lives

 

Pity it starts off with psychosocial bullshit.

 

This is just weird - you'd think there'd be some document somewhere.

 

And continues with it. For this style of document, it's quite subtly couched.

 

Crikey, they've got it in for old fat women haven't they. That "female and overweight" thing sounds like rubbish to me, something White's pulled out of the Wichita research or something.