Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by worldbackwards, Nov 13, 2014.

  1. worldbackwards

    worldbackwards Senior Member

    Messages:
    2,051
    Likes:
    10,246
    http://www.meassociation.org.uk/201...ive-conference-in-september-13-november-2014/

    Can't say I'm much liking this

    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.
     
    Last edited: Nov 13, 2014
    Min, SueJohnPat, catly and 7 others like this.
  2. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,254
    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...

    Hmm... well, the following extract is precisely what causes that breakdown in trust...
    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.
     
    Last edited: Nov 13, 2014
    MEMum, cigana, zzz and 13 others like this.
  3. shahida

    shahida Senior Member

    Messages:
    120
    Likes:
    202
    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?
     
    ukxmrv, mango, Sidereal and 4 others like this.
  4. A.B.

    A.B. Senior Member

    Messages:
    3,750
    Likes:
    23,212
    Also, science isn't about finding compromises between different opinions. That politics.
     
    moosie, lastgasp, Dolphin and 12 others like this.
  5. shahida

    shahida Senior Member

    Messages:
    120
    Likes:
    202
    so true A.B. But mE is SOO entangled in politics. In some ways it is politics if you know what i mean.
     
  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,255
    Likes:
    32,062
    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.
     
    MEMum, moosie, cfsStevew and 22 others like this.
  7. alex3619

    alex3619 Senior Member

    Messages:
    12,983
    Likes:
    36,874
    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.
     
    medfeb, meandthecat, MEMum and 5 others like this.
  8. shahida

    shahida Senior Member

    Messages:
    120
    Likes:
    202
    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?)
     
    Last edited: Nov 13, 2014
    Kati and Bob like this.
  9. worldbackwards

    worldbackwards Senior Member

    Messages:
    2,051
    Likes:
    10,246
    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...

    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?
     
    Min, mango, jimells and 5 others like this.
  10. alex3619

    alex3619 Senior Member

    Messages:
    12,983
    Likes:
    36,874
    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.
     
    Min likes this.
  11. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,930
    Likes:
    10,187
    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.



    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.
     
    Min, zzz, shahida and 4 others like this.
  12. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,254
    England (south coast)
    You make a good point. Or it allows what is essentially psychological research to be carried out in the name of biomedical research.
     
    Min, mango, Wildcat and 2 others like this.
  13. A.B.

    A.B. Senior Member

    Messages:
    3,750
    Likes:
    23,212
    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.
     
    Last edited: Nov 13, 2014
    Min, mango, Kati and 5 others like this.
  14. alex3619

    alex3619 Senior Member

    Messages:
    12,983
    Likes:
    36,874
    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.
     
    zzz likes this.
  15. alex3619

    alex3619 Senior Member

    Messages:
    12,983
    Likes:
    36,874
    Logan, Queensland, Australia
    Lol, we should collect a list of absurd quotes and publish it. He will of course justify it by saying behavioral treatments can be physical.
     
    Kati, CantThink and Cheshire like this.
  16. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,254
    England (south coast)
    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.
     
    Min, shahida, Sean and 4 others like this.
  17. alex3619

    alex3619 Senior Member

    Messages:
    12,983
    Likes:
    36,874
    Logan, Queensland, Australia
    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.
     
    zzz, shahida and Kati like this.
  18. A.B.

    A.B. Senior Member

    Messages:
    3,750
    Likes:
    23,212
    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).
     
    Sean, CantThink and Valentijn like this.
  19. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,930
    Likes:
    10,187
    :D So many words were vying for the position in that moment twaddle made it to my fingers first.
     
    alex3619 likes this.
  20. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,930
    Likes:
    10,187
    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.
     

See more popular forum discussions.

Share This Page