Help me find some facts! :)

Sasha

Fine, thank you
Messages
17,863
Likes
34,218
Location
UK
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!
 

Scarecrow

Revolting Peasant
Messages
1,904
Likes
5,335
Location
Scotland
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)

Methods
We compared the clinical presentation, prevalence and incidence of ME/CFS based on a sample of 143,000 individuals aged 18 to 64 years, covered by primary care services in three regions of England. Case ascertainment involved: 1) electronic search for chronic fatigue cases; 2) direct questioning of general practitioners (GPs) on cases not previously identified by the search; and 3) clinical review of identified cases according to CDC-1994, Canadian and Epidemiological Case (ECD) Definitions. This enabled the identification of cases with high validity.
We were careful to choose practices with GPs with experience in diagnosing ME/CFS. The effect of this approach on representativeness of cases was judged to be justified, otherwise we would have severely under-estimated the true disease occurrence, as GPs without an interest in ME/CFS would more often fail diagnose it. This resulted in an imbalance in numbers of GP practices in the three -regions, with East Yorkshire over-represented. The sample size was calculated (using EPI-INFO version 3.7 software) to detect a prevalence of ME/CFS of 0.5% with a confidence level of 95% and precision of 0.4%. Lower precision would be achievable for population subgroups defined by geographic location and gender, and for incidence risk estimation.
Edited: I mistyped the CCC prevalence rate as 0.1%. I've corrected the figure above.
 
Last edited:

worldbackwards

Senior Member
Messages
2,051
Likes
10,097
  • a link to an official UK (DoH/DWP/NHS) statement that ME/CFS is an organic (non-psychological) disease
At your service. A statement from a health minister in the Lords from 2008:
Lord Darzi of Denham: My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition of an unknown cause.
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.
 
Last edited:

Sasha

Fine, thank you
Messages
17,863
Likes
34,218
Location
UK
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.
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.
 

Scarecrow

Revolting Peasant
Messages
1,904
Likes
5,335
Location
Scotland
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.
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.
 

Scarecrow

Revolting Peasant
Messages
1,904
Likes
5,335
Location
Scotland
a link to an official UK (DoH/DWP/NHS) statement that ME/CFS is an organic (non-psychological) disease
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

Acknowledgement from version 1
“The author and Medical Services gratefully acknowledge the contribution of the
authors (Professor S Wessely, Professor P D White and Professor M Aylward) of
the enclosed articles and their kind permission to reproduce them in this module.
In addition the author would like to express his gratitude to Dr P Dewis for his helpful
comments and suggestions.”
CFS is one of a group of conditions called ‘Medically Unexplained Syndromes’ and
is probably best regarded as a heterogeneous spectrum of disorders, multifactorial
in origin and sharing a similar symptom complex. In CFS physical, psychological
and social factors all play a part.

At one end of the scale are the (uncommon) cases where there is a very clear
history of the sudden onset of fatigue after a proven infection, such as Epstein Barr
virus; at the other, cases strongly associated with current or pre-existing psychiatric
disorder. In fact, most patients with CFS will also meet the criteria for a current
psychiatric disorder23.
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,218
Location
UK
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.
 

Scarecrow

Revolting Peasant
Messages
1,904
Likes
5,335
Location
Scotland
@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
1. Introduction
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a multifactorial
heterogeneous illness with physical, psychological and social elements, resulting in
significant pervasive fatigue that can lead to profound disability.
Aetiology
The precise cause(s) and pathogenic mechanism(s) are yet to be fully defined in
CFS/ME, however it is likely that the aetiology of CFS/ME is multifactorial in nature.
Environmental factors, abnormal physiological pathways and genetic pre-disposition
are all likely to contribute to symptom production and response to illness in
CFS/ME.

CFS/ME research studies have shown abnormalities in brain structure/function
(including neuroendocrine responses), muscular function, immune function and
sleep disturbance, along with associations with certain infectious factors. However,
these have remained isolated findings, which require further study and verification in
clinical trials.

The multiplicity of proposed causes such as an infectious disease (e.g. infectious
mononucleosis), altered stress hormone response, altered immune response,
altered gene expression, sleep problems, alterations of mood, coping strategies,
and toxin/chemical exposure give further weight to the argument that the composite
term CFS/ME best describes this condition currently and that it is a spectrum of
disease.

It is considered probable that several different conditions exist with different disease
mechanisms within the overall case definition. Much research is directed at trying to
identify these so called different ‘phenotypes’. This is because it is likely that
different phenotypes will require different therapeutic approaches.

Predisposing factors that have been identified include certain personality features
(introversion and neuroticism) [4] and inactivity in childhood. [5]

Twin studies have shown a familial predisposition, although no genetic defects have
been found so far. [6]

Precipitating factors include an infectious trigger in up to three quarters of patients.
[7] Many infective ‘triggers’ have been identified including Epstein-Barr virus (EBVthe
cause of infectious mononucleosis/glandular fever), hepatitis A, influenza and
coxsackie virus.

However, it has proved difficult to establish a causal link between CFS/ME and past
viral infection. There is currently no evidence that CFS is caused by any ongoing
chronic infection.

Other stressful life events (such as death of close family members or loss of a job)
or difficulties may be associated with the development of CFS/ME, particularly if the
stress is ongoing. [8] A combination of some adverse life event in combination with
a recent infection is a common scenario in clinical practice.
Indicators of a good prognosis are:

• Male sex
• A definite history of an acute viral illness like glandular fever at the onset
• Mild disability and few symptoms
• Clinical features showing a pattern of evolution towards functionalrecovery
• Early diagnosis aimed at eliminating associated physical disorders and/or
identifying psychiatric illness along with other complicating psychological
or social factors
• A management approach which may encompass physical, psychological
and social elements that allows a stepwise approach to functional
improvement using rehabilitation

While indicators of a poorer prognosis include:

• Older age group
• Female and overweight
• Onset of symptoms without any clear precipitating factor
• Clinical course characterised by severe and unremitting symptoms
• Severe and persistent disability
• A management approach that over-emphasises the importance of either
complete rest or which advocates a rapid return to pre-illness levels of
physical activity
• Co-associated conditions such as fibromyalgia, fluid retention syndrome or
irritable bowel syndrome
• Those with co-morbid significant medical conditions or mood disorders
• A complex background of adverse psychological and social factors
(including illness beliefs, search for legitimacy and pervasive inactivity)

Notwithstanding the above indicators, the precise prognosis in any individual
case is impossible to define and while individuals should be encouraged that they
have a good chance of making a recovery it must be appreciated that a
substantial proportion will not.

In many patients, disability and quality of life can be improved, sometimes to a
significant extent. Those who recover may be at risk of recurrence. Those who
improve are at risk of relapse.

People with CFS/ME have variations in the severity of their symptoms and will
experience setbacks/relapses or transient increases in fatigue and other
symptoms. These setbacks/relapses can vary significantly in their duration and
severity, being anything from a slight reduction in function through to severe
symptoms resulting in significant disability.

With effective management interventions, the frequency, severity and duration of
setbacks/relapses should be reduced. Management of setbacks/relapses may
vary according to the cause. For example, it may be appropriate to maintain an
exercise programme if stress has been a causative factor, but not if there is an
active infection. Setbacks/relapses appear to be caused by different things;
triggers can include, for example, sleep disturbance, overactivity, stress or an
active infection (such as a common cold). However, it may not always be possible
to identify a cause.

CFS/ME is not associated with increased mortality.
Also of interest
Epidemiology
Prevalence is difficult to calculate with precision because of differences in
diagnostic evaluation (no standardisation of diagnostic criteria), medical staff and
patient attitudes, and social acceptability.

A review of CFS/ME in the Lancet in 2006 put the worldwide prevalence between
0.2% and 2.6%. [2] Within the UK, the NHS choices website reports it is estimated
that around 250,000 people have CFS/ME. [3]

The mean age of onset is 29-35. Children can, however, be affected and this is
most commonly between the ages of 13 and 15 years.

Women are affected more than men (around three quarters of cases are female). It
can affect all social classes and ethnic groups. [2]
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,218
Location
UK
@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.
Pity it starts off with psychosocial bullshit. :bang-head:
 

worldbackwards

Senior Member
Messages
2,051
Likes
10,097
While indicators of a poorer prognosis include:
• Older age group
• Female and overweight
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.