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Wessely honoured with a knighthood for his work for GWS and ME

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
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Firestormm wrote: "But not everyone is 'let down' or fails to overcome 'unsympathetic clinician' views. It can be a tough ride but is not insurmountable. And let's face it, ME is not considered permanent or disabling - though we 'old timers' might consider it so."
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@ Firestormm: You appear to be ignoring the public evidence of the official and institutional prejudice towards ME Insurance claims, as well as ME Incapacity and ESA claims.

As for believing (as you have stated) that Disability Living Allowance (DLA) is awarded on care and mobility needs alone, and not refused according to the specific illness. My own (nearly 5 year case) disproves your trusting belief in official proclamations from Westminster, and your trust that 'officialdom' generally 'gets it right'..

And please don't commiserate with me, and give me advice. After 5 years I ended up more informed about how DLA assessments and Tribunal Appeals, and SS Commissioners' cases actually operate than I suspect you are.
.

Wildcat. I won't then commiserate with you. I have provided advice. Plenty of advice over plenty of years. I have recently 'won' an appeal for ESA and one for DLA - so maybe just maybe I do know from where you are coming (in this respect at least).

No diagnosis automatically affords the right to benefits unless terminal or unless a person is undergoing chemotherapy (and one rule on this latter has only recently been changed).

Arriving at an assessment or tribunal armed with scientific facts or medical opinion on what ME is or isn't will not help the individual IMO.

All claims are made based on the way in which a person's ability to function is affected by their disability. When my own decisions were turned down, my disability was not the issue.

It was - and remains - the degree to which my disability prevents me from doing the things that they have decided are important indicators of my ability to work - or in the case of DLA - mobility and care needs.

I have to say, Wildcat, that I am not endeared to your attitude towards me. The 'system' sucks for anyone who is sick especially. The deck is stacked against us. It is a very hard fight and it isn't enough any longer to be deserving.

Having to fight when unable to do so is wholly wrong in my view - more so when those whose existence is supposed to enable them to fight alongside or in place of those who cannot fight for themselves is being restrained by Government funding e.g. Citizens Advice.

Even if I were to lose the next assessment then I would still maintain my view. Just because I finally won my appeals does not mean I am enamoured of or defending the system. As regards the Work Capability Test there has been a concerted effort by those organisations representing 'fluctuating conditions' (meaning symptom fluctuations before you ask) that MIGHT change the way in which the assessment process is delivered.

I don't know if you have read it or followed it's development. If you haven't and want to then I'll post a link. It is now at the point I seem to remember where the DWP will be considering testing the revised questionnaire - though I will be honest here and say that I think the revised questions are too complex.

I will conclude with saying that in my experience, a tribunal is a better place to get ones case and situation across than by simply completing forms and trying to get suitable and accurate medical evidence. I found it more preferable as the court could see how much this was affecting me.

I found I could try and talk and help them to understand. But at the end of the day they are constrained by the law and by their own interpretation of it. If you want my advice - I will say this. Do not hold anything back when in front of the assessment panel or in court. Break down if you have to. Personally I find talking about what I can and cannot do very upsetting, as well as my dependence on others.

I think that where I have gone wrong in the past is to put on a brave face when I should have been far more realistic. But that's just my experience and I do genuinely wish you well. If you haven't already done so then have a word with the ME Association (if you can bear to I know that they are not everyone's 'cup of tea').

Fire.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
I totally agree. In many ways the treatment of GWS sufferers has been even more scandalous than the treatment we've received.

As an aside, when you first joined this forum, I was dismayed at how naive you appeared to be regarding Simon Wessely. It's refreshing to note that you now appear to be far more sceptical about both the man's character and his work.

I'm certainly far more knowlegable now, but had I to do it all over again I would, in life I'd never dislike someone simply because I was told to, I need to see the proof of bad character. If you recall I dis ask for such proofs and even that seemed to annoy some as if I was challenging what they saw as fact, turns out thought that much of what has been claimed simply wansn't true, many beieved it to be so but only because they hadn't questioned prior claims. The man has clearly done much to be critisized for, so why bother with the extra step and demonise him.

I have to say for me at least the jury is still out regards his character, while there's no doubt that over time his views have been, shall we say, 'repositioned' I'm still to see the smoking gun which shows that he's a calculated liar rather than a beleiver who is misguided, the 'repositioning' must be troubling for him, but I'm guessing pride and face will stop him admitting it publically until the game is well and truely over.

I'd concede that he's certainly political though, but to be honest I can't say whether that's good or bad without seeing him on a day to day basis and deciding if patients or politics come first.

One of the first things I became aware off regarding him was the charity cycles he was doing for the military, that's always going to win him friends, and I'm guessing as it saves the Government from doing the right thing financially by our troops, it's worth a gong.

I'm sure we both accept that there are far more deserving cases out there, doing more, selflessly and without fanfare but they're the kind who find reward in the doing not in the seeing to have done.

Another political feather to this whole saga, Government are screwing the public sector financially, so throwing a few gongs their way makes it seem like they still appreciate the NHS at least. Watch out next year for a few going the way of the Police or Teachers. In the end it's all a crock of s**t, but as I said, none of it changes anything for us, it's just an old boys back slapping stage show.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
Absolutely. But as we know common sense is the missing component in SW's 'investigations' not to mention 'conclusions'.

Yes, I suspect much of his work is coloured by actions he sees as rewarding those who have rewarded him, beyond that I suspect there's an inner battle of trying to keep the pyramid of cards from falling down. I have no doubt that the GWS 'investigations' were coloured by a fore thought of 'hmm, this seems very like ME/CFS, so since I've been told it's definately not depleted uranium then it must be psycological', and how important was it to the West that depeted nuclear waste added to munitions wansn't to blame, I'd say about as important as the tobacco industry refuting any claim that they were adding addictive carcenogenics to cigarettes.

Where you can't fault him is that he appears at least to have taken psycological care for vets, and lets face it they need it more now than ever before in history, forward, again I'm guessing, but that's probably why a gong went his way.
 
Messages
15,786
I have to say for me at least the jury is still out regards his character, while there's no doubt that over time his views have been, shall we say, 'repositioned' I'm still to see the smoking gun which shows that he's a calculated liar rather than a beleiver who is misguided, the 'repositioning' must be troubling for him, but I'm guessing pride and face will stop him admitting it publically until the game is well and truely over.

I'd characterize him as both a calculated liar and a misguided believer. He advocates deceiving patients extensively for their own good when necessary. Semantic games aside, there isn't a moral distinction between deliberately nurturing a false impression, and outright lying:
Given the clear ethical imperative against lying, what can be left? I suggest the solution is to say little. Is it imperative that the patient be told their illness is truly "all in the mind"? I suspect not.
Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53
Also, to be a true believer in psychological causation of ME/CFS, and our alleged bias against psychiatry, despite all of the research to the contrary (some of which has his name on it), requires a rather remarkable warping of his perceptions of reality.

For example:
No differences were found between CFS and RA patients in measures of perfectionism, attitudes toward mental illness, defensiveness, social desirability, or sensitivity to punishment (a concept related to neuroticism), on either crude or adjusted analyses. Alexithymia scores were greater in the RA patient group.
Wood B, Wessely S. Personality and social attitudes in chronic fatigue syndrome J Psychosom Med 1999:47:385-397
Diagnosis may send patients in the direction of support groups, with their overrepresentation of chronic sufferers and frequent anti-psychiatric attitudes. . . .
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Like their neuorological findings, their neuropsychological findings are disappointing. In their reporting, they link subjective complaints to psychological distress/depression (cf. CFS):

The sick veterans reported far more symptoms indicating difficulties in memory or concentration but when these functions were tested the results were surprisingly normal (15). Although sick veterans felt that their thinking, concentration and memory were impaired, this was not reflected in the test results. There is thus a difference between subjective complaints and objective tests. This is not unique to Gulf veterans, with similar findings being reported in civilians with chronic fatigue syndrome (CFS).

http://www.kcl.ac.uk/kcmhr/publications/15YearReportfinal.pdf

That statement, in itself, demonstrates the quality of the King's College, London, document on GWS.
Many of us know, through bitter experience, that we have a cognitive disability.
Do they not come across patients that can't read for long without their brains shutting down?
It's more evidence that they ignore the patients that don't fit into their preferred model of illness.
I'm certain that I have come across research evidence that demonstrates cognitive disability in CFS patients.

There's no reference for the assertion re CFS.
There is a reference for the paper that allegedly demonstrates that 'veterans' do not have impaired concentration and memory. Interestingly, it is co-authored by someone called S Wessely:

Cognitive functioning and disturbances of mood in UK veterans of the Persian Gulf War: a comparative study.
David AS, Farrin L, Hull L, Unwin C, Wessely S, Wykes T.
Psychol Med. 2002 Nov;32(8):1357-70.
http://www.ncbi.nlm.nih.gov/pubmed/12455934

I haven't got access to the full paper, so I can't judge its quality, but it doesn't seem to be an investigation into GWS, specifically, and nor does the King's College document.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
I'd characterize him as both a calculated liar and a misguided believer. He advocates deceiving patients extensively for their own good when necessary. Semantic games aside, there isn't a moral distinction between deliberately nurturing a false impression, and outright lying.

Also, to be a true believer in psychological causation of ME/CFS, and our alleged bias against psychiatry, despite all of the research to the contrary (some of which has his name on it), requires a rather remarkable warping of his perceptions of reality.

Yes I've noted of late that he's rather reluctant to repeat, or even elaborate upon, some quite categorical statements he's made in the past. (COM).

My feeling however is, that as a group, we either accept he is now irrelevant and start ignoring what's happening in the world of make beleive, or we co-operate fully by way of 'proving' that the psycological model is nothing more than very selective hype.

We have to get smart, and clearly from the two awards in quick succession, decrying SW, often with inacurate or angry retoric, isn't smart from a progress point of view. I want to get better, I'll worry about working out where and whether I need to get even once I have my life back.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
My feeling however is, that as a group, we either accept he is now irrelevant and start ignoring what's happening in the world of make beleive, or we co-operate fully by way of 'proving' that the psycological model is nothing more than very selective hype.

I agree. I favour the latter approach, as I think that ignoring proponents of the psycho-social model will give them too much freedom. IMO, the psycho-social model needs to be rigorously challenged, while at the same time encouraging and supporting biomedical research which will be what ultimately brings us answers.
 
Messages
15,786
What a load of c**p.
That statement, in itself, demonstrates the quality of the King's College, London, document on GWS.
Many of us know, through bitter experience, that we have a cognitive disability.

There was a study done on CFS patients involving Wessely, at http://www.simonwessely.com/Downloads/Publications/CFS/73.pdf:
They were impaired on tests of spatial span, spatial working memory, and a selective reminding condition of the pattern-location association learning test. . . . Patients with chronic fatigue syndrome were also impaired on verbal tests of unrelated word association learning and letter fluency.
Thus we propose that in chronic fatigue syndrome, the subjective experience of both central fatigue and impaired concentration and memory is a reflection of reduced attentional capacity which is manifest objectively as impaired performance on effortful memory tasks.

I think they're essentially concluding that we think we're trying hard, but we're not, because we have an exaggerated sense of how much cognitive effort we're exerting, in the same way that they assume we have an exaggerated sense of how much physical effort we're exerting.

So they make the objective cognitive abnormalities disappear entirely. I'm pretty sure one of the GWS papers had a similar result and conclusion dismissing it.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
What do we want him to do, make up the criteria for GWS?

Erm, no.

Honest and careful clinical observation would do.
Or use the existing descriptions of GWS, as the basis for a hypothetical discrete illness.

Historically, there is a method to define an illness, and it hasn't necessarily relied on large data sets.
The method is: careful clinical observation.
The way to define a disease is to observe signs and symptoms.
Once you get a cluster, or set, of patients who display the same (or similar) signs, or who have the same (or similar) symptoms, then you can hypothesise that they have exactly the same disease, and more forwards from there to investigate it further.
Once you have a carefully defined set of signs and symptoms, based on careful clinical observation of a set of patients, then you can investigate further, in order to prove or disprove the hypothesis that it is a single disease.

This can even be done with a single patient, in rare disorders.

It's really not rocket science. This basic science/medicine is what has been neglected for CFS.
I hope that this is what the CDC is now working on, in its new project. But as it is the CDC, we can only hope.

If clinicians don't carry out this basic medicine, but just lump all patients who experience 'fatigue' together, without bothering to try to differentiate them, then the science can never move forwards. Not only is it good medicine, but it's also just common sense to observe patients closely, and to try to differentiate sets of patients. The same applies to GWS and CFS.

As an example, all patients displaying a rash, would not be lumped together. Instead, a careful observation would be made of the nature of the rash, and associated signs and symptoms, in order to distinguish patients, and to create subsets of patients. The rash could be due to: eczema, psoriasis, measles or meningitis etc. A good clinician would not lump all patients together (who displayed a rash), and declare that as some patients had a stress-related rash, then those patients who had rashes that didn't clear up had maladaptive illness beliefs.

I just don't see how what he says about GWS is really be compared to me/cfs.

Really?

Mark, I absolutely agree with you. I would also like to see the data. But until we have that I think it is premature to call it a distinct illness or not.

Unless they investigate patients with a similar pattern of symptoms, and health experiences, then they'll never know if there is a distinct illness.
Wessely's approach (for both GWS and CFS) seems to be to investigate patients with a diverse, unselective, wide, and vaguely overlapping, pattern of symptoms.
And then to make conclusions about GWS/CFS based on observations of a selected minority of patients who do not have the illness that he is superficially purporting to be investigating.

I need to reread the science based medicine article I cited above to refresh my memory.

The article that you cited is just an article, written by one person. I wouldn't place too much weight to it. There are other sources, some of which have been cited in this thread.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
...if, decades after the gulf war, and over 50 years after the Royal Free ME outbreak, it is true that there is no really high quality rigorous "science based medicine" evidence whatsoever about any of these illnesses, then rather than saying "oh well medicine and doctors can't do anything then" because science based medicine is the be-all and end-all, what we are all obliged to do instead is to go with the best evidence we do have, and yes it's of much lesser quality due to the cohort definition problem, and it's all subject to a fair degree of critique and uncertainty, but there is still a mass of evidence, from anecdotal reports and the wealth of experience of long-term patients and physicians, through to some good scientific research on good cohorts based on barely-validated definitions, which does suggest quite a bit about the nature of these illnesses. So the best we can all do is muddle through and try to make the best of all that body of evidence, rather than discount it because it isn't up to the best modern standards. Unfortunately, a dogmatic approach to scientific evidence will be likely to pick off every piece of the evidence that we do have and question it to bits until there is nothing there at all, which really gets us nowhere and is logically self-consistent and rational but ends up as a purely destructive activity.

I applaud you for your patience, in explaining this, Mark.
However, judging by past experience, it will have to be explained repeatedly.
 
Messages
15,786
We have to get smart, and clearly from the two awards in quick succession, decrying SW, often with inacurate or angry retoric, isn't smart from a progress point of view. I want to get better, I'll worry about working out where and whether I need to get even once I have my life back.

My apologies for the delay in getting the relevant quotes into the post you're referring to at http://forums.phoenixrising.me/inde...work-for-gws-and-me.21116/page-12#post-322490. I had some serious issues with envolve (the forum chat thingy) trying to load for eternity and couldn't edit my post for quite a while :confused: But I think my rhetoric was accurate enough, with those quotes taken into account.
 

biophile

Places I'd rather be.
Messages
8,977
I have to wonder, if Wessely believes there is no distinct GWS and/or lumps it in with CFS/MUPS, do his allegations of harassment from CFS "militants" extent to those with GWS?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
There was a study done on CFS patients involving Wessely, at http://www.simonwessely.com/Downloads/Publications/CFS/73.pdf
They were impaired on tests of spatial span, spatial working memory, and a selective reminding condition of the pattern-location association learning test. . . . Patients with chronic fatigue syndrome were also impaired on verbal tests of unrelated word association learning and letter fluency.
Thus we propose that in chronic fatigue syndrome, the subjective experience of both central fatigue and impaired concentration and memory is a reflection of reduced attentional capacity which is manifest objectively as impaired performance on effortful memory tasks.
I think they're essentially concluding that we think we're trying hard, but we're not, because we have an exaggerated sense of how much cognitive effort we're exerting, in the same way that they assume we have an exaggerated sense of how much physical effort we're exerting.

So they make the measured cognitive abnormalities disappear entirely. I'm pretty sure one of the GWS papers had a similar result and conclusion dismissing it.

Thanks Valentijn.
So even their own research demonstrates cognitive disability in CFS patients?
I'm certain that there has also been non-Wessely research which demonstrates that CFS/ME patients have cognitive deficits.
I'll look it up later.

(Edited.)
 

Daffodil

Senior Member
Messages
5,875
fking sick fks.

enlander has appealed to the queen in letters years ago, urging her to do something about the state of CFS patients in the UK. i think he was just ignored. enlander was the doctor in waiting to the royal family.

what on earth is the use?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Yes I've noted of late that he's rather reluctant to repeat, or even elaborate upon, some quite categorical statements he's made in the past. (COM).

My feeling however is, that as a group, we either accept he is now irrelevant and start ignoring what's happening in the world of make beleive, or we co-operate fully by way of 'proving' that the psycological model is nothing more than very selective hype.

We have to get smart, and clearly from the two awards in quick succession, decrying SW, often with inacurate or angry retoric, isn't smart from a progress point of view. I want to get better, I'll worry about working out where and whether I need to get even once I have my life back.

Hi Holmsey, I almost agree. However, the idea that we must now all take the same position in unfeasible and not necessary. However a coordinated effort to analyze what has gone on and discredit it on the basis of evidence and reason is I think possible. I would not have started writing my book if I thought otherwise.

Blaming people leads to all sorts of problems. Focussing on the written evidence is much better in terms of what can be uneqivocally shown.

I think I am still not going to use the Sir though. Thats just my quiet little protest.

What is different in my approach as I currently envisage it (having not done most of it yet) is that I want to catalogue and analyze options for fixing the issues, not just show the problems.

Bye, Alex
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I agree. I favour the latter approach, as I think that ignoring proponents of the psycho-social model will give them too much freedom. IMO, the psycho-social model needs to be rigorously challenged, while at the same time encouraging and supporting biomedical research which will be what ultimately brings us answers.

There are three aims in advocacy. Help people, stop bad science, and promote good science. I used to say four, but helping patients and make an eventual treatment or cure available to all is really just one mission: helping people.

I have no doubt that between us we have the skill set to stop the bad science. We just lack resources, projects to focus our actions, and the health to follow through as much as we would wish. A few thousand more advocates wouldn't hurt either.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
:confused: But I think my rhetoric was accurate enough, with those quotes taken into account.

No Valentijn, my appologies if you though my reference to angry rhetoric was aimed at you, it was a general comment on where almost all conversations on SW end up, strangely this thread hasn't been as bad, maybe it's the feel good holiday factor.

Best wishes,;)
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
This shows how far down the "rabbit hole" the sick, filthy government/system of the UK has gone...and yesterday, Ian Duncan SMith (who runs the welfare department of government) claimed those on welfare were getting too much!!

http://www.bbc.co.uk/news/uk-england-london-20897681

Obese who refuse to exercise 'could face benefits cut'


Comments (860)

_65056227_65056226.jpg


Under the proposals, overweight benefit claimants could have their money docked if they refuse exercise regimes

Continue reading the main story
Related Stories


Overweight or unhealthy people who refuse to attend exercise sessions could have their benefits slashed, in a move proposed by Westminster Council.

GPs would also be allowed to prescribe leisure activities such as swimming and fitness classes under the idea.

The Tory-controlled council said the aim was to save £5bn from the NHS budget when local authorities take over public health provision from April.

BMA member and GP Dr Lawrence Buckman called the idea "draconian and silly".

The measures are contained in a report entitled A Dose of Localism: The Role of Council in Public Health, in a link-up between Westminster Council and the Local Government Information Unit (LGiU).

Continue reading the main story
Analysis

Mike Sergeant Political Correspondent, BBC News
The idea of cutting someone's benefits if they don't swipe into a yoga, weights or Zumba class might seem absurd.
But the authors of this report insist this is a serious attempt to develop new policies and positive incentives to meet a huge public health challenge.
From April councils assume responsibility for a multi-billion pound public health budget. They also take control of administering council tax benefit (the reduction in council tax for those unable to pay the full amount).
These two developments are a huge challenge, but also an opportunity. In theory people making healthier choices (and saving their council money) could be given some money off their council tax bill.
Councils certainly have the power to design new council tax schemes. But there will be howls of protest from those appalled by the idea of a town hall computer monitoring our "healthy" choices.

Under the proposals, overweight benefit claimants could have their money docked if they refuse exercise regimes prescribed by doctors.

Smart cards would be brought in to monitor the use of leisure centres, meaning local authorities could reduce welfare payments for those who fail to follow their GP's advice.

Resident, housing and council tax benefit payments "could be varied to reward or incentivise residents", the report said.

It claims "early intervention techniques" could help save more lives and money.

These include linking welfare payments to healthy lifestyles and rewarding those who take responsibility for their own health, the report's authors claim.

Red tape would be cut for "non-alcoholic venues" to encourage a more responsible approach to drinking, which the report says was promised but never delivered by the change to 24-hour licensing laws.
'Emotional issues'
British Medical Association GP committee chairman Dr Buckman, a GP in north London, called the proposals "some of the silliest things I've heard in a long time".

Continue reading the main story
“Start Quote

A fast-food generation need support in the long term”​
End Quote Susannah Gilbert Spokeswoman, Big Matters

"When I was first told about this I thought it was a joke," he said.

He added: "The best way [councils] can intervene is to stop restaurants and fast-food chains providing the kind of food that make people put on weight, and interfere with the way foods are sold in shops."

Obesity support organisation Big Matters spokeswoman Susannah Gilbert said: "It would be fairer to use the money to support people rather than to penalise people.

"Any plans for health should be holistic," she added. "Some people have emotional issues to do with food.

"A fast-food generation need support in the long term."

But Jonathan Carr-West, acting chief executive of the LGiU, said the proposals offered "a win-win" solution.

He said the proposals were about "finding innovative ways to both improve people's lives so they don't suffer from these conditions, while also saving money for the public purse".

"We have to look at ways of managing demand, of helping people not to need such expensive health interventions," he said.

He said the proposals would "help people lead healthier, happier lives".

Westminster council leader Philippa Roe said: "This report contains exactly the sort of bright, forward-thinking and radical ideas that need to be looked at.

"The potential improvements to the nation's health and to the public purse could be significant."

But the change to local authority control over public health has led many councils to voice concerns about how much money they will get and the formula that central government will use to allocate funding.

The public health funding announcement was originally expected on 19 December.

I used ot be built like a brick shithouse, 14 1/2 stone, 50 inch chest, had bother getting jackets/shirts that fit or I'd rip them when flexed, weight trianign routine, martial arts, walked miles every day.
now I'm a 19 stone blamange'. I DID NOT CHOSE OT BE FAT YOU SCUM!!

this all ties in with Wessely, it's the attitude, the culture, the cliques, the mind sets, the completely F'ING INHUMANITY!!!

BURN IN HELL YOU B*ST*RDS!

Sorry to distrub the trian of a nice flow, yer debate is sane folks :) but those against us, are *not*
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There is a trend in western civilization toward authoritarianism. This has been going on for several decades. At what point will there be a backlash? Or will we all succumb? Forcing people to exercise does not necessarily achieve results. Dealing with food is a better way to go, such as finding ways to ensure healthy food is much cheaper than junk food, whereas currently junk food is cheaper (I presume, it is here). It would also help if exercise facilities were cheaper for those on benefits. Incentivise, yes, penalize, no. Not everyone will be helped by penalties, and its just a way to be nasty and punitive to no good effect for those people. That will have consequences for social cohesion, which in the UK is already under severe pressure.
 

user9876

Senior Member
Messages
4,556
Has any serious attempt at such cluster analysis ever been made? Where's that mass of data, and where are the papers on this effort, for ME/CFS, or for GWI? If we are now, decades on, still at the point where in both cases the approach is still to look at the whole cohort as a massive, heterogeneous blob, is that situation not a devastating indictment on those who've taken principle responsibility for investigating these illnesses?

Part of any classification or clustering process is to have a defined feature space. Hence a precursor to clustering on a the whole cohort would be to have a consistant way to describe symptoms. This would mean doing things like defining a more accurate language to describe fatigue and other symptoms.

It does seem strange to me that no one has done this especially given it would be easy enough to use standard questionaires across multiple treatment centers, scan them then there is database software that will do much of the analytics.