Help me find some facts! :)

[Scarecrow]

The 25% figure refers to the % of PWME who are bedbound/housebound rather than "severe"/"very severe" (unless that's how they're defining it in this paper).

To recap:

http://webcache.googleusercontent.com/search?q=cache:iVtBtWwSCkIJ:www.um.es/lafem/Actividades/CursoBiologia/Consultas/Actual-chronicfatigue.pdf &cd=8&hl=en&ct=clnk&gl=au

Chronic Fatigue Syndrome
BY K. KIMBERLY McCLEARY and SUZANNE D. VERNON, PhD
"For others, CFS has a profound impact, and they may be housebound or bedbound most of the time. About
25% of people with CFS are fully disabled by the illness (1)."

McCleary and Vernon don't qualify what they mean by fully disabled. They just say 25% are, citing this study:

http://www.rds.hawaii.edu/ojs/index.php/journal/article/view/14
Disability in Chronic Fatigue Syndrome and Idiopathic Chronic Fatigue
Adam W. Carrico, Leonard A. Jason, Ph.D., Susan R. Torres-Harding, Ph.D., and
Elizabeth A. Witter
Center for Community Research
DePaul University, Chicago, IL

Carrico er al. don't use the words housebound but they do use bedridden. This is their definition of Severe and Very Severe:

Levels of Disability As part of the Screening Questionnaire, participants were asked to describe the
impact of their fatigue during the last month on a seven point scale, with 1 being
bedridden and 7 being able to do all work or family responsibilities without any
problems. Responses to this question were then used to classify participants into the
groups proposed by Cox and Findley (2000). The mild group consisted of participants
who reported being able to work full time and on some family responsibilities, but who
had no energy left for anything else. The moderate category consisted of participants who
reported being able to do light housework or work part time or work on some family
responsibilities. The severe group comprised participants that reported being ambulatory,
but unable to do light housework. Finally, the very severe group reported being bedridden
and unable to work or do other activities. Only two persons were classified into the very
severe group. Therefore, the severe and very severe groups were combined and treated as
one group (severe/very severe) in the subsequent analyses.

The more I look, the less I am able to make sense of McCleary and Vernon's claim, that 25% are fully disabled.

In any case the number of people with CDC CFS in the study is 31. 8 is the closest whole number to 25%.

It makes no sense (that I can see).

Table 1
Self-Reported Level of Ability
for the CFS and ICF Groups

CFS (N=31) ICF (N=44)
Level of Ability N N
Mild 14 30
Moderate 12 10
Severe/Very Severe 5 4

 

[worldbackwards]

I remember (I think) that Jane Colby is responsible for the 250,000 figure and I have a vague idea that the 25% could be part of that. Could I be right?
*tension*

 

[Persimmon]

I understand the 25%ME Group was founded in 1995. It predates the Lenny Jason paper that's been cited in this thread by years.

The 25%ME Group is a support group for severe ME cases. Their name reflects an understanding that 25% of ME cases become severe.

So, this 25% notion appears to have been around since at least 1995.

 

[Valentijn]

In any case the number of people with CDC CFS in the study is 31. 8 is the closest whole number to 25%.

I think the reasoning is that people with idiopathic chronic fatigue who are housebound or bedbound by it are likely to actually have undiagnosed CFS. So I think the severe idiopathic chronic fatigue patients are being presumptively moved into the CFS category for purposes of calculation.

Thus there 31 "CFS" patients, of whom 5 are severe/very severe. And the 4 idiopathic patients are being added to that, resulting in 35 patients, of whom 9 are severe/very severe. 9 / 35 = 25.7%.

Methodologically it's a bit dubious, on par with certain researchers who include large numbers of fatigue patients to draw conclusions about ME patients. While uncomplicated "chronic fatigue" by itself is unlikely to cause severe status, it's possible those patients have a different undiagnosed disease causing severe disability. Though perhaps ME is the most likely explanation.

At any rate, it seems to be a fair bit of guess-work.

 

[Scarecrow]

But what's quite neat is that 32/18,765 is 0.17%, which is pretty close to the minimum prevalence of 1994 CDC CFS found by Nacul et al. (post #2).

Re the 0.17% prevalence. It wasn't.

408 of 18,765 were deemed to be CFS like at Stage 1. Of those, only 166 agreed to further follow up. So the prevalence of CFS would have been higher.

 

[Scarecrow]

I think the reasoning is that people with idiopathic chronic fatigue who are housebound or bedbound by it are likely to actually have undiagnosed CFS. So I think the severe idiopathic chronic fatigue patients are being presumptively moved into the CFS category for purposes of calculation.

Thus there 31 "CFS" patients, of whom 5 are severe/very severe. And the 4 idiopathic patients are being added to that, resulting in 35 patients, of whom 9 are severe/very severe. 9 / 35 = 25.7%.

Methodologically it's a bit dubious, on par with certain researchers who include large numbers of fatigue patients to draw conclusions about ME patients. While uncomplicated "chronic fatigue" by itself is unlikely to cause severe status, it's possible those patients have a different undiagnosed disease causing severe disability. Though perhaps ME is the most likely explanation.

At any rate, it seems to be a fair bit of guess-work.

Well that would make sense numerically but it's more than a 'bit' dubious if that's what McCleary and Vernon did. And if they didn't meet criteria for 1994 Fukuda, what are the chances they would get a ME diagnosis?

 

[Sasha]

I seem to have opened up an enormous can of worms here with this 25% thing! I thought someone would know the reference of the top of their heads and that it would be a two-minute job to find it.

Thanks for all the searching, guys, but from my point of view at this stage I think it's time to abandon the search (unless you're really enjoying yourselves!).

 

[worldbackwards]

I did find this, "a testimonee" from 1745 by Doris, a self-proclaimed "wyse womanne" who lived somewhere in the Dudley area and was famed for the effectiveness of her potions, as well as her capacity to see into the future:

There wyll bee a pestylence and it wyll cause much troubyle for mennee far and wyde. And thyr aryms and lygs wyll be heavy, and they wyll forget the nymes of their mother and thyr systers mothyrs brother and sometymes of themsylfs. And mennee wyll lye down and ryse back up again mennee tymes over a lyfetyme, but mark ye this, twenty fyve percent wyll lye down and wyll stay lyed down all of thyr days.

And the wyse men and sages and Knyghts of the realm wyll mock and pillory thym and prod thym with stycks, and they wyll be sorely afflycted by the behaviour therapee of the mynd and the panacea of the gryded exercyse. But thyr tyme wyll come and those who were lyde low WYLL RYSE AGAIN AND TYKE THYRE REVYNGE!

On the one hand, it could be said it's not very scientific. On the other hand, this is ME, what do you expect?

 

[Sasha]

I did find this, "a testimonee" from 1745 by Doris

I think I've finally found my source.

 

[JaimeS]

@worldbackwards , you win ALL THE INTERNETS.

 

[eafw]

On the one hand, it could be said it's not very scientific. On the other hand

on the other hand, Doris from Dudley has a lot more credibility than the PACE trial !

 

[worldbackwards]

on the other hand, Doris from Dudley has a lot more credibility than the PACE trial !

She knew all about Fukuda and CCC as well. It's uncanny.

 

[Bob]

We have lots of statements from the UK government that ME/CFS is neurological. The Countess of Mar has had it confirmed many times in government statements that the government considers it to be neurological.

I think there are more recent statements, but these are the most recent that i've been able to find:

• On 21 November 2011 Lord Freud, Minister for Welfare Reform, confirmed in a letter to me that the Department for Work and Pensions does not consider ME/CFS to be a mental disorder. The letter was unequivocal: “the Department of Health has indicated that they have ‘always relied on the definition set out by the World Health Organisation in its International Classification of Diseases (ICD)under the ICD code G93.3, subheading other disorders of the brain’. The DWP isin agreement with this view. Therefore, for the avoidance of doubt, I can be clear that the Department does not classify CFS/ME as a mental health disorder.”

http://www.meresearch.org.uk/news/countess-of-mar-letter/

And a written statement, from the government, via a FOI request. I don't know if it's any help. It's dated Nov 2012:

The Department of Health has always relied on the definition set out by the World Health Organization in its International Classification of Diseases (ICD) under ICD Code G93.3, subheading ‘other disorders of the brain’.

https://www.whatdotheyknow.com/request/cfsme_definition#incoming-335519
At the above link, click on 'download', and it will take you to the quote, here:
https://www.whatdotheyknow.com/request/137096/response/335519/attach/2/Long Email Body 26 11 2012.html

 

[Bob]

Some time ago, I went down the rabbit hole, re the 25% figure, and I think i got to the bottom of it...

It seems to originate from an independent working group, commissioned by the UK government's Department of Health in 2002. See details in the quote box, below.

And we've had a chat about it before, Sasha:
http://forums.phoenixrising.me/inde...draft-report-is-out.34480/page-26#post-540102

I think this may have originated from a 2002 independent report commissioned by the UK Department of Health.

A Report of the CFS/ME working Group:
Report to the chief Medical Officer of an Independent Working Group.
2002.
Department of Health.
http://webarchive.nationalarchives....@dh/@en/documents/digitalasset/dh_4064945.pdf

This is the relevant quote:
"Estimates suggest that up to 25% of people with CFS/ME are so seriously affected that they are unable to perform most basic personal tasks and are confined to bed or spend the majority of the day in bed. Such patients feel particularly alone and isolated.The severity, complexity, and longevity of the illness are poorly understood."



NICE have slightly different ideas about the prevalence of severely affected patients, but they acknowledge that no proper research has been carried out...

NICE Clinical Guidelines for CFS/ME:
http://www.ncbi.nlm.nih.gov/books/NBK53587/

"No definitive studies have been carried out in the UK to determine the prevalence of severe CFS/ME in people with CFS/ME, but estimates range from 25% [4] (population and setting not clear) to a lower figure experienced in general clinical practice.[‡‡‡] People who have severe CFS/ME may be unable to carry out activities of daily living and may spend a significant proportion, or all, of the day in bed."

Note that the first NICE reference (no 4.) in the above quote is for the same DoH (independent working group) report that I've cited and quoted. As we've discussed in another thread, it's not substantive evidence.

I'm pretty sure that every time we've seen the 25% figure quoted, it stems from the working group report. Most people don't know where it originates from, but cite it from second-hand or third-hand sources. The total lack of epidemiology studies means that we don't have any better data.

Edit. Having said all of that, I don't know where the working group got their data from, so perhaps there's an older source. (See the next post.)

And there's a bit more discussion here:
http://forums.phoenixrising.me/inde...ss-of-the-pace-trial.18722/page-3#post-284914

 

[worldbackwards]

Ah, but I was looking at Anne MacIntyre' s book the other day and I'm pretty sure it was in there. And I bought it in 2000. I'll have a look tomorrow. I'm pretty certain the 25% ME Group predates that as well.

Oh well...

 

[Bob]

Ah, but I was looking at Anne MacIntyre' s book the other day and I'm pretty sure it was in there. And I bought it in 2000. I'll have a look tomorrow. I'm pretty certain the 25% ME Group predates that as well.

Oh well...

Oh, OK, in that case I might well be wrong. It's as far back as I managed to find, but perhaps I didn't make it to the bottom of the rabbit hole after all?!? I haven't read this entire thread, so I apologise if I'm contradicting things that have already been discussed.

I've added this to my previous post:
Edit. Having said all of that, I don't know where the working group got their data from, so perhaps there's an older source.

 

[worldbackwards]

Can't find a date for The 25% ME Group, but I've been aware of ME support groups since about 2000 and I can't remember a time when they weren't around. Could be entirely wrong though.

MacIntyre's book (last updated in 1998 and sorely in need of a new edition) in fact has a 20/60/20 split in terms of "recovered" / relapse - remitting / severe. However, her definitions are very loose - her "relapse-remitting" claim is highly optimistic (she claims that patients will by and large be functioning at about 70% of previous activities) and recovery doesn't imply that the lillness is completely gone. But "severe" does mean severe

It is an odd book in some ways, very practical, useful and definitely non-psychiatrically focused, but it does have these odd blind spots. I tend to think that they come from prejudices relating to the author's experience on top of lack of useful research (I've noticed the same in other reasonably decent books, in both this and different areas of the illness).

But I digress - it does show that this rough split has been going around for a good while, though it only attributes the division to "a rough estimate", with no source.

 

[Sasha]

Thanks, @Bob, that's the one! You've found it.

 

[Scarecrow]

Can't find a date for The 25% ME Group, but I've been aware of ME support groups since about 2000 and I can't remember a time when they weren't around. Could be entirely wrong though.

They've been around for 20 years:
http://www.25megroup.org/home.html

 

[worldbackwards]

They've been around for 20 years:
http://www.25megroup.org/home.html

I (rightly) thought it was before I was sick. Which rather puts a 2002 date for that number into question.