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Daily Telegraph: 'If an ME sufferer looks fine, the school assumes they are'

N.A.Wright

Guest
Messages
106
I have seen a gender bias in ME of 1:2 to 1:4 in different places. Yet I have also seen a suggestion that men are more likely to get other diagnoses. In teens I think its much close to 1:1, does anyone have any more specific information? Yet the trend across all studies in adults is clear: lots more women than men. So we can debate the exact ratio but not much more than that. Its interesting that funding for serious epidemiological studies has been requested since the 1980s, by Komoroff at least, and yet there were never funded. Instead we got the CDC surveillance studies.
A potential confounder in the gender ratio is that age of onset may be gender related, and we have no consistent data on age matched to prevalence. What actually happens to ME/CFS patients as we age ? Unless ME/CFS suddenly abates when we hit 60 or we all die well before we hit 70, the age profile, as with any chronic disease that is not quickly fatal, should be balloon shaped as incidence builds prevalence year on year - there ought to be many 60 year olds with ME - perhaps several orders of magnitude more than 30 year olds and twice the number of 50 year olds, but this seems an almost invisible population.

Historically men have had more 'useful' alternative comorbid diagnoses - industrial injuries and diseases, or lifestyle diseases, although changes to work and lifestyle are tending to equalise by lowest common denominator these differences between men and women. But we really have no idea what the actual comparitive rates of ME/CFS incidence or prevalence are for men and women at any age after adolescence.

I'm not clear that current health reporting in either the US or the UK could support good large population level epidemiology of ME/CFS - the collected data just doesn't seem fined grained enough http://www.cdc.gov/nchs/data/nhsr/nhsr029.pdf In the UK, with a strong research bias toward ME/CFS being a pyschological/women's disease, the research data is heavily skewed by intentionally gender biased study cohorts and hospital based services are likely heavily influenced by that research when it comes to diagnosis. In any case hospital services don't have long term data. At present, the collection of valuable long term fine grained data from primary care is stalled because of concerns over medical file security;there is one potential very valuable source of data for the UK, although it is limited to older age groups it should be capable of yielding very significant epidemiology - UK Biobank
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
My latest reply to the guy claiming CFS is psychogenic:


Actually, its the psychosomatic claims that are not reproducible once you use objective outcome measures. Further, there are no objective measures that are diagnostic, and its based on a logical fallacy, the psychogenic fallacy, named by Richard Sykes.

There are now way more than 5000 published papers for CFS and ME showing objective abnormalities. Further, the results are so striking in some modern research that the findings are far more probable than most used in medicine. Many are now reproduced repeatedly, by many teams, sometimes using very different methods. So we know these are not artifacts of the methodology.

@120176A you are referring to outdated obsolete science.

There is NO proven case of mass hysteria. This itself is hysterical hyperbole. If you think its real, show me a paper that actually proves its real. In the case of ME, McEvedy who claimed the 1955 Royal Free Hospital outbreak was mass hysteria has been debunked, and it is hard to understand how he got his PhD on this as he never saw even one patient, and never provided any proof at all.

There is a test of disabling pathophysiology in ME/CFS, that has been recognized as a probable diagnostic test for 7 years now. As I said earlier, that test is from 1949 and is an obvious one to do, using CPET on a two day protocol. In the cases I am aware of where doctors have used this (anecdotal info) going back to the 80s, nothing came of finding the problem, except they realized the patient was sick.

http://www.workwellfoundation....

ME and CFS(CCC) is an area where research is evolving so fast, that you are either up-to-date or your knowledge base is as relevant as the mating habits of the Dodo.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
You've done a great job on there, Alex.

Actually, that guy has done such a great job of looking like a prejudice-filled ranter (he's claiming now that the PWME who are posting all have double-barrelled names, which anyone reading the names can see isn't true) that I think he's destroyed any credibility that he might have had.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
You've done a great job on there, Alex.

Actually, that guy has done such a great job of looking like a prejudice-filled ranter (he's claiming now that the PWME who are posting all have double-barrelled names, which anyone reading the names can see isn't true) that I think he's destroyed any credibility that he might have had.

This from someone who use an alphanumeric code as his name? At least my alpha numeric name on PR starts with my first name, and the number I use everywhere to disambiguate me from all those other alexes. It seem though that there is at least one other alex3619 out there, in Japan. I understand why people sometimes require anonymity, but to then criticize people for their real names, or any choice in pseudonym, is hypocritical.

In some cases its important to not feed the troll. In other cases this serves to show everyone they ARE a troll ... no ambiguity.
 

Sidereal

Senior Member
Messages
4,856
One of the characters posting on this article doesn't seem to believe in multiple sclerosis or allergies either. :cautious:

You see this over and over again in virtually every comment section of articles on ME in the British mainstream media. Some irrationally angry disaffected individual(s), usually male, will come out of the woodwork to attack the imaginary stereotype of the evil middle class middle aged white female bored housewife who is just a bit tired.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
One of the characters posting on this article doesn't seem to believe in multiple sclerosis or allergies either. :cautious:

You see this over and over again in virtually every comment section of articles on ME in the British mainstream media. Some irrationally angry disaffected individual(s), usually male, will come out of the woodwork to attack the imaginary stereotype of the evil middle class middle aged white female bored housewife who is just a bit tired.

Yup. I didn't bother tackling him on grounds of sexism (why even bother) but coincidentally I was watching that day a recording of a TV documentary of the 50-year battle to get adequate compensation for the victims of Thalidomide. Thalidomide was known to have no anti-nausea effects and was prescribed as a sedative to pregnant women suffering from morning sickness because at the time, morning sickness was assumed to be psychosomatic and due to women being over-excited at the prospect of having a baby.

I wonder if anyone has ever done a review of conditions assumed to be psychsomatic and that had that nonsense blown out of the water? It's a pretty sorry history for psychiatry.
 

N.A.Wright

Guest
Messages
106
. Thalidomide was known to have no anti-nausea effects and was prescribed as a sedative to pregnant women suffering from morning sickness because at the time, morning sickness was assumed to be psychosomatic and due to women being over-excited at the prospect of having a baby.
The view of Thalidomide as an anti emetic may not have been wrong - http://www.ncbi.nlm.nih.gov/pubmed/20193338 and http://www.ncbi.nlm.nih.gov/pubmed/20210231 There may well have been a preponderance of view that saw morning sickness as psychosomatic but a variety of hypotheses including it being an allergic response were developed from the 1920s onwards. I know from my family that it was taken seriously enough to require hospitalisation in the late 1940s at least for exceptional cases, not least because it was linked to perinatal rickets - the baby in the womb is starved of nutrients.

Treatment for morning sickness wasn't a whim, there were, and still are major implications for the health of mother and baby. Thalidomide came into use under circumstances of poor regulation and a desperate need to maximise an industrial base - post WWII Germany and ironically the UK, sedating annoying women was certainly not the only motivating factor. A couple of years younger and there's a good chance I'd have been a thalidomide kid given how allergic the mothers in my family are to their sons. Hindsight is wonderful, but medical errors are rarely black and white.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
So much for the BBC view, then!

My mother was offered Thalidomide while she was carrying me but refused it. There but for the grace, etc.
 

Battery Muncher

Senior Member
Messages
620
Off topic, but if the co-owner of the Daily Telegraph (Sir Frederick Barclay?) really does have ME/CFS, then we should be doing everything we can to recruit his help.

Apparently the Barclay Brothers are worth ~£2.25billion (approx $3billion?). Funding the Lipkin study would be pocket money to them!
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Off topic, but if the co-owner of the Daily Telegraph (Sir Frederick Barclay?) really does have ME/CFS, then we should be doing everything we can to recruit his help.

Apparently the Barclay Brothers are worth ~£2.25billion (approx $3billion?). Funding the Lipkin study would be pocket money to them!
Good idea. I didn't think the Barclay brothers were known for their philanthropy, but:
"The brothers are involved in philanthropy and were knighted in 2000 for their support to medical research, to which they have donated an estimated forty million pounds between 1987 and 2000."
http://en.wikipedia.org/wiki/David_and_Frederick_Barclay
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Prof Julia Newton is on the front page of the daily telegraph (uk) today, discussing ME and POTS!

See the right-hand column (unfortunately the full text isn't readable in this image):
https://mobile.twitter.com/Telegraph/status/478639950112763904

Go Prof Newton! How did she manage to get it on the front page? She's amazing!

I can't see the article on their website yet but it might not go up till after midnight.
If anyone wants to start a new thread, please do.

BTW thanks to all of you posting comments on the telegraph's website underneath the other article, and for challenging the trolls. I'm sure the online activity has helped get this new article to the front page.
 
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Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Prof Julia Newton (re ME and POTS) is on the front page of the daily telegraph (uk) today!

See the right-hand column (but this image is not good quality):
https://mobile.twitter.com/politicshome/status/478656080026038273

Go Prof Newton! How did she manage to get it on the front page? She's amazing!

I can't see the article on their website yet but it might not go up till after midnight.
If anyone wants to start a new thread, please do.

BTW thanks to all of you posting comments on the telegraph's website underneath the other article, and for challenging the trolls. I'm sure the online activity has helped get this new article to the front page.

Excellent. Thanks Bob. Probably talking about alternate diagnosis and/or treating OT? Not sure. Will have to buy a paper now - trip to the newsagents: first time in I don't know how long :)

I began listening to that GP training/information webinar she did for AfME (I posted on her thread). I think she mentions treatment on there but can't be certain - will have to check - but might as well read the paper first.

N.B. I will start a new thread. I realise now you have gone to bed.
 
Messages
44

N.A.Wright

Guest
Messages
106
I think if you do some digging there have been contributions to ME research in the past. Pity they don't seem to be active now.
Yes - in Scotland - Gow or Behan possibly. The Barclay twins are now in their 80s and while they appear to be active in their business roles it's not surprising that their interests may have narrowed. The Barclay's aren't necessarily an ideal choice to be associated with a philanthropic cause, they've come under wide criticsm for their tax avoidance practices and also their alledged patrician and bullying behaviour in their tax exile of Brecqhou and also neighbouring Sark. The Telegraph's editorial position on ME is obviously welcome, but in a free society I don't think anyone can be comfortable that fair coverage should be dependent on editors having to look over their shoulders to check the sympathies of oligarchic Press Barons. However the Barclay's are famously private and perhaps they are indeed continuing to invest in ME research anonymously , for which we of course would be grateful whatever criticisms might be directed at the Barclays.