Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model

[franktwisk]

Would anyone like to speculate why these documented immune pathologies are not more widely reported and accepted (and I mean not just by the usual suspects)?

Seems to me that any discussion of ME/CFS should start from these findings rather than ill-defined fatigue.

According to prof. de Meirleir is defining a disease (sorry "syndrome") by its symptoms rather silly.

Biomarkers (immunological , infectious, physiological etc) are the only objective measures,
e.g. to define subgroups (low NK cell acivity) and to measure the results of interventions (e.g antivirals).

I think you will find the answer to your question in politics (not in logic, facts or science).

The "few odd brave" (the "usual suspects") sometimes have to pay an enormous price for their engagement in ME/CFS.
From a personal and carreer point of view, it is not a very attractive area of research....

 

[Galena1]

THanks Galena1.


Isn't No 15 Manuscript the edited version that appears in the initial link?

For those interested in this paper specifically, and the peer review process generally, the reviewers' and authors' comments make fascinating reading.

Probably, Marco,:Retro smile: just having a lousy week and struggling to focus.

 

[Galena1]

Marco, you commented, "Would anyone like to speculate why these documented immune pathologies are not more widely reported and accepted (and I mean not just by the usual suspects)?"
Being an old cynic, I'm more than happy to speculate!

1. As far as I am aware, but happy to be corrected, the pharmaceutical industry are not, or minimally, involved in funding research into ME.
2. These companies are awaiting a 'breakthrough' from those that are involved in bio-medical research and will only then begin to take a serious interest, with a view to producing suitable drugs with a specific 'eye' to the possible profits to be made. These organisations are first and foremost businesses and their focus is, inevitably, profit. Unpleasant as it may be to accept, the drug companies are not interested in your/our well-being other than as a source of revenue.
3. Meanwhile, they are content to accept the 'psychological' perception of ME and continue make mega profits from peddling anti-depressants etc. Assuming possibly millions of ME sufferers worldwide the current 'mindsets' amount to a lot of cash.
4. Point 3 also applies to the 101 different 'therapies and training programmes' that are offered. The amount of profit generated must be astronomical.
5. Obviously, until such time as the cause of ME is pinpointed there will always be those that will seek to profit at the expense of the sufferers.

I said it would be cynical!

 

[Marco]

Frank

My phrasing was probably confusing (too many double negatives).

By the 'usual suspects' I meant those convinced of a biosocial causation who are unlikely to be persuaded by any objective evidence - not the 'few brave souls'.

Politics indeed - and money - not that the two are unconnected. But it does make me wonder about the quality of medical education if the medical profession (and I mean those in influential posts - not your average GP) can't determine what is and isn't quality research. Of course those in high positions, or aspiring to them, probably have to pay more attention to politics than to scientific rigour.

Galena1. I'm sure there's a lot of truth in what you say - but also a great desire in the ME community to be properly exploited by big Pharma.

There's another thread ongoing on the gender balance in ME/CFS. Like it or not, I fear that the widespread perception of ME/CFS as a "womens' illness" hurts as all as its too easily dismissed as 'hysteria', the 'weaker sex' etc. The medical profession alas is notoriously chauvinsitic, not only as regards gender but also intellectually. Conflating the two they probably regard an illness that is associated with women and usually referred to psychiatrists as beneath their dignity.

I could of course be wrong and expressing my own prejudices.

 

[Dolphin]

Marco, you commented, "Would anyone like to speculate why these documented immune pathologies are not more widely reported and accepted (and I mean not just by the usual suspects)?"
Being an old cynic, I'm more than happy to speculate!

1. As far as I am aware, but happy to be corrected, the pharmaceutical industry are not, or minimally, involved in funding research into ME.
2. These companies are awaiting a 'breakthrough' from those that are involved in bio-medical research and will only then begin to take a serious interest, with a view to producing suitable drugs with a specific 'eye' to the possible profits to be made. These organisations are first and foremost businesses and their focus is, inevitably, profit. Unpleasant as it may be to accept, the drug companies are not interested in your/our well-being other than as a source of revenue.
3. Meanwhile, they are content to accept the 'psychological' perception of ME and continue make mega profits from peddling anti-depressants etc. Assuming possibly millions of ME sufferers worldwide the current 'mindsets' amount to a lot of cash.
4. Point 3 also applies to the 101 different 'therapies and training programmes' that are offered. The amount of profit generated must be astronomical.
5. Obviously, until such time as the cause of ME is pinpointed there will always be those that will seek to profit at the expense of the sufferers.

I said it would be cynical!

My two cents, for what it is worth:
I'm not convinced pharmaceutical companies would be particularly happy with the situation in ME/CFS nor am I convinced they are the root of our problems.

As far as I know, many/most of the antidepressants that are taken by patients are off-patent and they don't make a huge detail of money on them.

And lots of pharmaceutical companies don't sell antidepressants.

The two "evidence-based treatments" are non-pharmacological treatments, GET and CBT based on GET, from which pharmaceutical companies don't make money.

I would welcome more pharma interest in the illness. We can choose to take the products they offer. I don't want to be offered just non-pharmacological treatments for the rest of my life.

 

[Galena1]

Hi Dolphin -

My two cents, for what it is worth:
I'm not convinced pharmaceutical companies would be particularly happy with the situation in ME/CFS nor am I convinced they are the root of our problems. I'm not suggesting that drug companies are the root of the problem, merely that their interest won't be sufficiently 'ignited' until bio-specifics are narrowed down enough to encourage their involvement. I recall, vaguely of course, the Zantac scandal. Zantac was prescribed to treat the symptoms of, I think,H.Pylori. It was only after Zantac came off-patent that it was revealed that this drug, if used with anti-biotics could cure the problem. Zantac was taken by many people for years because this information was not released. Clearly, actually curing people was not the preferred option

As far as I know, many/most of the antidepressants that are taken by patients are off-patent and they don't make a huge detail of money on them. Maybe not now, but they certainly made wads of cash initially.

And lots of pharmaceutical companies don't sell antidepressants. But haven't they been involved in their original development?

The two "evidence-based treatments" are non-pharmacological treatments, GET and CBT based on GET, from which pharmaceutical companies don't make money. Yes, I understand what you are saying. What I suppose I'm trying to say (but badly) is that under the current "evidence based treatments' there is still a large market for drugs to treat symptoms/effects rather than organisations investing in bio research. The large drug companies, in my opinion, are biding their time and letting the 'small fry' do all/most of the leg work until such time as there is a 'breakthrough'. When this happens, and I'm convinced it will, there will a stampede of drug companies wanting a piece of the action. My contempt for CBT and GET is well documented:Retro mad:

I would welcome more pharma interest in the illness. We can choose to take the products they offer. I don't want to be offered just non-pharmacological treatments for the rest of my life. I agree 100%

 

[Dolphin]

Hi Dolphin -

My two cents, for what it is worth:
I'm not convinced pharmaceutical companies would be particularly happy with the situation in ME/CFS nor am I convinced they are the root of our problems. I'm not suggesting that drug companies are the root of the problem, merely that their interest won't be sufficiently 'ignited' until bio-specifics are narrowed down enough to encourage their involvement.

Yes, I agree - that's how I see it.
And in a way, that's good because bringing a drug to market can be huge money so I wouldn't fancy depending on the ME/CFS community to raise the money.

Although if it is an existing drug, like an antiretroviral, that should be a lot cheaper, so not as dear.

As far as I know, many/most of the antidepressants that are taken by patients are off-patent and they don't make a huge detail of money on them. Maybe not now, but they certainly made wads of cash initially.

And lots of pharmaceutical companies don't sell antidepressants. But haven't they been involved in their original development?

To be honest, I don't know that much about the pharmaceutical indursty.
But I haven't seen much evidence that those who have been psychologising the illness, suggesting GET and CBT based on GET, etc in the UK anyway are close to pharmaceutical companies.

And as I recall, Simon Wessely, for example, thinks antidepressants mainly work because of the placebo effect - he has never really pushed them.

I see much more evidence of the insurance industry, if we are pointing fingers at an industry. But think psychiatry itself, and a lack of rigour, is probably a bigger problem.

The two "evidence-based treatments" are non-pharmacological treatments, GET and CBT based on GET, from which pharmaceutical companies don't make money. Yes, I understand what you are saying. What I suppose I'm trying to say (but badly) is that under the current "evidence based treatments' there is still a large market for drugs to treat symptoms/effects rather than organisations investing in bio research. The large drug companies, in my opinion, are biding their time and letting the 'small fry' do all/most of the leg work until such time as there is a 'breakthrough'. When this happens, and I'm convinced it will, there will a stampede of drug companies wanting a piece of the action. My contempt for CBT and GET is well documented:Retro mad:]

Again, agree with you - think they're biding their time.

I would welcome more pharma interest in the illness. We can choose to take the products they offer. I don't want to be offered just non-pharmacological treatments for the rest of my life. I agree 100%

Great.

 

[Mithriel]

I left Action for ME years ago, ( before it turned to the dark side) because its newsletter always had articles about alternative medicine.

What all these articles had in common was that they were all positive. They said that aligning your bed along the magnetic axis would cure you, taking a flower remedy would rebalance your chakra and make you well.

Because they were not constrained by any rules they could make outrageous statements with conviction.

The "stories" from the biopsychosocial school are exactly the same. They take the bare facts and manipulate them into a cohesive, easily understood superficial story with a happy ending.

Politicians, journalists even doctors, love them. Like all good stories they tap into unconscious cultural biases and leave people feeling good about themselves. They can help these "poor people" in a way that is cheap while remaining superior and self satisfied with their compassion.

Real science is messy, especially biology and it is complicated. I am interested but even my eyes glaze over as I struggle to understand CREB genes, env, pol, Th1 and TH2 and those are the easy parts.

If your spellchecker doesn't recognise it, your MP certainly won't :Retro smile:

This neurotic woman needs to be helped to see she isn't really ill as opposed to a complicated discussion of mitochondrial abnormalites or the methylation block - it's no contest. People don't want to make the effort to understand what we are saying to see if it is true.

And that is the ones without an underlying agenda. No wonder we have suffered so much, yet been ignored for decades.

Mithriel

 

[Galena1]

They said that aligning your bed along the magnetic axis would cure you, taking a flower remedy would rebalance your chakra and make you well

If your spellchecker doesn't recognise it, your MP certainly won't :Retro smile:
Mithriel

Luvly response, Mithriel, (should that perhaps be Mythriel!) I haven't laughed so much for a long time!

Dolphin - I think that we are in agreement. Given my current cognitive state, who would know. What the hell! Love and hugs all round

 

[Sam Carter]

I left Action for ME years ago, ( before it turned to the dark side) because its newsletter always had articles about alternative medicine.

What all these articles had in common was that they were all positive. They said that aligning your bed along the magnetic axis would cure you, taking a flower remedy would rebalance your chakra and make you well.

...........

Mithriel

My favourite "bogus" remedy advertised by AfME in the early nineties was "Pimat", a white handkerchief with red dots on it which you placed underneath your mattress so that you could "power your aura while you sleep". (Yes, you did read that correctly....)

 

[Martlet]

My favourite "bogus" remedy advertised by AfME in the early nineties was "Pimat", a white handkerchief with red dots on it which you placed underneath your mattress so that you could "power your aura while you sleep". (Yes, you did read that correctly....)

ROFLOL - I wonder how I missed that one.

I dropped my subscription to them after a year or so. Now I remember why.

 

[Galena1]

My favourite "bogus" remedy advertised by AfME in the early nineties was "Pimat", a white handkerchief with red dots on it which you placed underneath your mattress so that you could "power your aura while you sleep". (Yes, you did read that correctly....)

Mmm....Does anyone know how these red dots should be positioned?
What size dots?
What shade of red?
Will any size handkerchief do?
Where exactly should this be placed under the mattress?
Surely a white sheet covered in red spots would be much more effective?
How about if I can catch Measles? Could this be classified as MRSA (Mobile Red Spot Antidote)?
Thank God things have moved on from pointless therapies like this, or have they?

 

[franktwisk]

Frank

My phrasing was probably confusing (too many double negatives).

By the 'usual suspects' I meant those convinced of a biosocial causation who are unlikely to be persuaded by any objective evidence - not the 'few brave souls'.

Politics indeed - and money - not that the two are unconnected. But it does make me wonder about the quality of medical education if the medical profession (and I mean those in influential posts - not your average GP) can't determine what is and isn't quality research. Of course those in high positions, or aspiring to them, probably have to pay more attention to politics than to scientific rigour.

About the quality of research...

After my experiences with BMC, Dutch scientific journals etc. I have serious doubts about the quality in general
(making it difficult to make a distinction between "good"/facts and "bad" science/fiction).

Science is indeed socially controlled, and so it should be.
You cannot sit on a scientific body in this country without knowing that
decisions are strongly influenced by the priorities set by elected politicians.

Bombs and the balance sheet
Simon Wessely
The Guardian, Saturday 1 March 2003
http://www.guardian.co.uk/books/2003/mar/01/featuresreviews.guardianreview1.

 

[ukxmrv]

I remember those Sam!

In fact I met a woman who was selling them at the same and saw one. It was slightly rubbery and not very big (maybe like 1 and a half or 2 pieces of A4 paper). She suggested putting in under the headboard end of the bed. Probably made a lot of money...

 

[Simon]

Zebra, Horses and HIV:

Not sure this is the best place to post this, but a new paper has suggested that HIV-fatigue attributed by Harvey & Wessely to psychosocial causes may in fact be linked to physiological processes. The first section of this post just runs through that psychosocial fatigue link in HIV. In their BPS paper they say that not only CFS fatigue, but also fatigue in real 'physical' illnesses - e.g. HIV- can be explained by their biopsychosocial model:

this model has been developed from research focused on the 'unexplained' fatigue of CFS. However, there is emerging evidence which suggests that it may be appropriate to extend it to encompass fatigue with an apparent medical cause. There are numerous examples of studies demonstrating that the fatigue associated with clear 'physical' illnesses is more closely associated with behavioural and psychological factors than with the severity of the underlying illness. For example, fatigue in HIV-infected patients is more strongly associated with psychological factors than with measures of HIV disease progression or the use of highly active antiretroviral drugs [29].

29. Fatigue among HIV-infected patients in the era of highly active antiretroviral therapy.

What that HIV study, by their colleagues at the Institute of Pyschiatry, concluded was:

The presence of fatigue in HIV-infected patients is most strongly associated with psychological factors and not with more advanced HIV disease or the use of highly active antiretroviral therapy. This highlights the importance of investigation and management of underlying depression and anxiety in patients presenting with fatigue.

I thought at the time this was quite a striking, and surprising finding; I would have thought that either disease status or medication regime would have been a significant predictor of fatigue. The authors of that HIV paper made much of weak or marginal findings to suggest that "These findings echo Petrie’s finding that catastrophic responses to illness are associated with more profound fatigue and greater levels of disability". So fatigue is down to the patient's response. The authors do ultimately concede the reality, though, that:

in this cross-sectional study we cannot draw any conclusions about the direction of causality, and whether the association between psychological distress is a cause or a consequence of the fatigue.

No mention of that in the Horses & Zebras paper.

New paper suggests physiological links to HIV fatigue (and possibly similar links in CFS)
However, a new paper looking at fatigue in HIV patients receiving antiviral therapy comes to a different conclusion.
As with the earlier HIV paper, the researchers found no correlation between HIV viral load or level of medication or CD4+ count (a marker of disease progression)

Prior dideoxynucleoside analogue (d-drug) exposure (P = 0.016) and the presence of clinical lipodystrophy syndrome (P = 0.011) were associated with fatigue. Additionally, fatigue severity correlated strongly with symptomatic orthostatic intolerance (r = 0.65; P < 0.001).

A correlation of 0.65 is huge for the link between fatigue and orthostatic intolerance. Many paper get excited about correlations half those levels (eg numerous CFS studies....).

As far as I can tell, they didn't look at the same psychological measures used by the earlier HIV cited by Wessely & Harvey so it's hard to make a direct comparison, but it does suggest a very different cause of the fatigue, and one that would largely contradict a BPS interpretation. Intriguingly, this new paper draws a parallel with CFS too.

Fatigue is very common and often severe in HIV-infected out-patients, despite viral suppression and good immune function. In a subgroup of patients, prior d-drug exposure may contribute to fatigue, suggesting a metabolic basis. Dysautonomia may also drive fatigue associated with HIV infection, as in other chronic diseases, and CFS/ME, and should be further evaluated with the potential for a shared therapeutic approach.

Actually, this paper probably deserves its own thread.

 

[Dolphin]

Thanks Simon.

Actually, this paper probably deserves its own thread.

Yes, agree esp. given that Julia Newton was one of the co-authors.

Also reminds me of the MRC "CFS/ME" award to a Kings College London research group looking at Hep C fatigue: http://forums.phoenixrising.me/inde...nt-fatigue-induced-by-interferon-alpha.13799/ . KCL was the place where the first HIV/AIDS review you mention was done and Max Henderson (corresponding author) and Hotopf are involved again:

http://rg.kcl.ac.uk/staffprofiles/staffprofile.php?pid=884
MRC
Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome.
£ 373,075.15
31-AUG-12 to 31-AUG-15
Trudie Chalder, Anthony Cleare, Richard Dobson, Max Henderson, Matthew Hotopf, Valeria Mondelli, Carmine Pariante

Also, Newcastle (2nd review you highlighted) is where the MRC "CFS/ME" award to look at Sjorgen's Syndrome went and Julia Newton will be involved.

 

[Simon]

Yes, agree esp. given that Julia Newton was one of the co-authors.

Also reminds me of the MRC "CFS/ME" award to a Kings College London research group looking at Hep C fatigue: http://forums.phoenixrising.me/inde...nt-fatigue-induced-by-interferon-alpha.13799/ . KCL was the place where the first HIV/AIDS review you mention was done and Max Henderson (corresponding author) and Hotopf are involved again:

http://rg.kcl.ac.uk/staffprofiles/staffprofile.php?pid=884
MRC
Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome.
£ 373,075.15
31-AUG-12 to 31-AUG-15
Trudie Chalder, Anthony Cleare, Richard Dobson, Max Henderson, Matthew Hotopf, Valeria Mondelli, Carmine Pariante.

Thanks - Trudie Chalder and Matthew Hotopf involved in this study of an immune model? I'm a little surprised to see such senior behaviourists there, though at least it's Cleare's field, IIRC.

Ps feel free to make a new thread for the JN paper, I'm away to my bed now. Zzzzzz