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Holgate - 'Encouraging new ideas for ME/CFS research'

worldbackwards

Senior Member
Messages
2,051
http://www.meassociation.org.uk/201...ive-conference-in-september-13-november-2014/

Can't say I'm much liking this

Emerging themes included: the likelihood that CFS/ME probably has many causes; the need to ‘stratify’ or group patients with similar symptoms together to see whether they share common causes or markers of biological processes; the need to recognise that what causes CFS/ME might be different to what maintains it; and the need to understand that diseases may not necessarily be either biological or psychological but may, in fact, be both.

That last point is an important one: we need to shout about the fact that CFS/ME has a biological basis. Regardless of any psychological involvement ― you can’t have psychology without biology.

Looks like we're being sold down the river (again) from where I stand.

It seems interesting that those here who attended the conference didn't seem to taking those ideas away from it.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
Your quote made me quite angry, and then I read the full article which is slightly more nuanced than your extract...
The next line after your quote somewhat changes the perception of Holgate's emphasis, and somewhat clarifies his position...
Stephen Holgate said:
The sooner we find this biological basis, or indeed bases, the better.


Stephen Holgate said:
The CFS/ME field has been marred by a breakdown in trust between patients, clinicians, researchers and funders; disagreement about research results; and a lack of investment by industry. But as I said at the conference, this isn’t about finishing something, it’s about starting something. The conference gave me the energy and enthusiasm to think that we can move this field forward.

Hmm... well, the following extract is precisely what causes that breakdown in trust...
Stephen Holgate said:
...the need to recognise that what causes CFS/ME might be different to what maintains it; and the need to understand that diseases may not necessarily be either biological or psychological but may, in fact, be both.
He needs to quickly recognize that this is 100% unsubstantiated propaganda (and we all know which vested interests provided those precise words for him to propagate.)

And, in terms of his focus/emphasis, he needs to recognize that if he insists on giving deeply harmful unsubstantiated propaganda (that has persistently harmed the patient community and divided the field over many years) an equal footing to real science, then the patient community will continue to feel alienated and abused, and will be very angry about it.
 
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shahida

Senior Member
Messages
120
the phrase having your cake and eating it comes to mind. He's got one hell of a job inviting both sides of this into one arena and trying to what, 'satisfy' them both? Can't see it working. how can the patients make our voices heard?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
the phrase having your cake and eating it comes to mind. He's got one hell of a job inviting both sides of this into one arena and trying to what, 'satisfy' them both? Can't see it working. how can the patients make our voices heard?

I think patients' voices are being heard. The deafening silence is from the medical research community. I am prepared to put it on record here that I share your disappointment. I see nothing to be gained by mentioning 'psychological' when the meaning of this term is take your pick. I am not sure that psychologists know what they mean by psychological. They certainly do not know what they mean by cognitive - except that it covers whatever that sort of mind thingy idea you cannot quite put in to words for the moment means whenever convenient.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
@A.B. and @shahida, science is what we need and should have and has been severely lacking due to lack of interest, ignorance, lack of funding, and competing interests. Those interests are mostly operating in a political framework. When science becomes mired in politics there is nearly always a problem. Yet a big difficulty is that to get support and interest in science requires politics. Science is a human endeavour, and politics often dominates in human endeavours.

The recognition of the dominating political influences in ME is why I shifted from being a science advocate to a science and political advocate. There are at least two fronts to this struggle to figure it all out. Those invested in this political mess are not going to be swayed by reason, evidence or science until we have enough science established that its overwhelming. The science can help in the political struggle, but its not enough. How many reasoned arguments, based on sound evidence, have fallen on deaf ears? Politics is a very different game, and one which I and I think most of us have limited capacity to engage in.
 

shahida

Senior Member
Messages
120
TOTALLY agree alex.
In terms of psychiatry what Dr Hornig and others (Dr Maes\?) are doing now is to delineate the field- so that person A who suffers from say anxiety or depression might be the one whose psychiatric symptoms are due to physical problems with the brain- and these will be delineated further. But for person B who suffers from (superficially) similar symptoms , however , the root cause for them may well be due to childhood trauma. This i think will uiltimately be the answer and is a battle from within psychiatry itself- Dr Hornig i believe calls herself a psychiatrist yet deals with the former- how psychiatric symptoms are due to various brain diseases. We see this most clearly with Alzheimers don't we. And there's a really good article on this by cort johnson -entitled 'a different kind of psychatrist' about Dr Theodore Henderson- check it out if you havn't already.Here's a quote: 'I approach psychiatry from a brain-based biological perspective.. Most people cannot be pigeon-holed into a single category and most psychiatric conditions are actually a range of disturbed neurobiological processes. - See more at: http://simmaronresearch.com/2014/09...inds-success-antivirals/#sthash.CYdujd2H.dpuf'
I hope that with such work a different narrative will therefore emerge in time.#
(Im no scientist so i think that's my foggy understanding- maybe this struggle is what JOnathon Edwards is talking about?)
 
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worldbackwards

Senior Member
Messages
2,051
The next line after your quote somewhat changes the perception of Holgate's emphasis, and somewhat clarifies his position...

The sooner we find this biological basis, or indeed bases, the better.

I don't think this does change the perception, as he's already made it clear that he sees biological research as a possible way of backing up a BPS argument, the kind of stuff that lets Peter White claim that he's a 'biomedical researcher', as he did in the NICE guidelines judicial review. The rest of the article has a Pinching-esque, all things to all people, glibness about it...

the phrase having your cake and eating it comes to mind. He's got one hell of a job inviting both sides of this into one arena and trying to what, 'satisfy' them both? Can't see it working. how can the patients make our voices heard?

I think you've hit the nail on the head there. It feels like Holgate is throwing the psychiatrists a bone, which leads me to wonder how many have been thrown to our side in the past and to what purpose. Did someone say politics?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There is no doubt at all that ME affects cognition. There is huge doubt its caused by cognition, and such arguments have never been substantially proven for any disease.

There is no question that how we think can have some impact on how we cope with disease. There is very little substantive evidence that it can lead to cure, not for any disease. These are theoretical claims backed up by suggestive evidence.

There are shifting semantic issues involved in talking about psychology. On the one hand of course there are psychological issues, we are not in comas. On the other hand there is no basis to infer that psychology is more than about how we cope with a devastating disease, one that is not only not understood by the medical community, but frequently not understood by patients. In very many ways this disease is counter-intuitive.

Its not surprising to me that the head of a group looking at the science is getting caught up in the politics. Especially in the UK. Let me however put a different spin on this ... I am not saying this is right, I am just raising an idea for debate, putting on my grey hat as it were.

One of the arguments that frequently arises in biopsychosocial research is that mental and physical factors are not completely separable. Therefore the mind is important. Therefore mental and social treatments are important. Some how along the way the physical side tends to be downplayed, and the social side largely ignored. This is then used as a justification for the primacy of psychotherapy.

The same argument can be used in reverse though. As soon as someone believes in this very confused argument, the option arises that biology is primary, by the same "logic". While BPS arose in part as a response to the growing dominance of biological psychiatry, all the arguments they use are relative and can actually be used to oppose an emphasis on psychotherapy. This just gets missed or dismissed by psychosocial proponents.

In one sense Holgate could be viewed (and I mean could, not should) as simply playing their game. If its both psychology and biology, and therefore this means that psych research should be done, then it equally means that biological research should be done. This cannot be dismissed when stated clearly as this would undermine one of the main justifications for psych research in this area.

The problem though is that this opens the door to the whole psychobabble illogic. This tends to be confirmatory research, and contrary research is usually just ignored. Most of the scientists doing the biological research are using a very different framework from most doing the psych research. Those theoretical frameworks, which underpin how the science is conducted, are not compatible.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Stephen Holgate said:
...the need to recognise that what causes CFS/ME might be different to what maintains it; and the need to understand that diseases may not necessarily be either biological or psychological but may, in fact, be both.



He needs to quickly recognize that this is 100% unsubstantiated propaganda (and we all know which vested interests provided those precise words for him to propagate.)

And, in terms of his focus/emphasis, he needs to recognize that if he insists on giving deeply harmful unsubstantiated propaganda (that has persistently harmed the patient community and divided the field over many years) an equal footing to real science, then the patient community will continue to feel alienated and abused, and will be very angry about it.

Agree a whole lot. We should be able to move past this political view of the illness by now.
This isn't just an incorrect way of thinking about ME it's an incorrect way with dire consequences for those who are sick.
I am in the midst of once again moving house. I've been unpacking simply because I have to. I can't do much any given day and it goes slowly.
With my first conscious breath this morning I was aware of my whole body pain, neurological sensations in my legs (crawling buzzing feeling under skin) and my arm was numb. My tinnitus is louder. I had no time to consider and ruminate and work myself up to catastrophising these symptoms, they were simply present. They wake me up at night.

Shame on S Holgate if he actually believes that nonsense. There is no science to support that. Non at all. Nada. Not any.

Often chronically sick people are exposed to a disproportionate amount of stress due to their circumstances. Practical support is then what is needed and is most useful for helping ill people have an improved quality of life.

I am so tired of hearing this twaddle.
 

A.B.

Senior Member
Messages
3,780
You make a good point. Or it allows what is essentially psychological research to be carried out in the name of biomedical research.

Mind-body magician P. White recently said that CBT is a physical therapy.

Freud also claimed to cure illness via psychotherapy. Nothing has really changed. Psychotherapy has been about exploiting desperate or helpless patients since the beginning.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The issue with BPS is that its mostly semantic twaddle. BPS means everything that plays a part, therefore everything is part of BPS. Its a semantic distinction that has no value aside from being a rhetorical device. I have argued elsewhere that the foundations of BPS, just like EBM, are sound, but how its used and has been used for much of last century is not sound. While Engels may have formally coined the term I think it goes back to the 1930s and prior, and was even then used as justification for horrific psychiatric practices.

Edit: Lol, @Snowdrop, we both call it twaddle.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
We should be able to move past this political view of the illness by now.
The problem is that the politics determines to a large extent (visionaries aside) what happens in society, including medical research and treatment. Ignoring politics is I think one of the big problems we have been facing in advocacy for decades. We are playing a good game of checkers, they are playing three dimensional chess. Reason should prevail, evidence should prevail, but politics is about persuasion and influence.
 

A.B.

Senior Member
Messages
3,780
According to some superficial, under-powered and ill-interpreted research studies, CBT allegedly changes cortisol levels, so therefore CBT research is now claimed to be biomedical research.

Yes. It was a non-randomized cohort study, there was no proper control group (of untreated patients), and the number of patients shrank from 46 to 24 over the course of the study. I suspect they have just found a way to discard patients that aren't getting better on their own (that could be as simple as creating a bizarre therapy that people will quickly abandon when it doesn't give results, while the rest might honestly believe they're improving thanks to the therapy).
 

Snowdrop

Rebel without a biscuit
Messages
2,933
The problem is that the politics determines to a large extent (visionaries aside) what happens in society, including medical research and treatment. Ignoring politics is I think one of the big problems we have been facing in advocacy for decades. We are playing a good game of checkers, they are playing three dimensional chess. Reason should prevail, evidence should prevail, but politics is about persuasion and influence.

Yes, I suppose that's true. It just seems that in this instance politics robs us completely as opposed to the usual 'nickel and diming' it does elsewhere.