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

[Cheshire]

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.

The more I read about psychology, the less I understand what it encompasses, what it means and what supports it.


I think in a certain sense a part of psychology is replacing a certain kind of religion, by giving moral norms. I can't prevent from thinking about that when they talk about unhelpful thoughts and maladaptive behavior, which could replace the sinner figure. Both bad religion and bad psychology rely on shame and guilt. Whereas it should only be about helping people suffering terrible pain to cope. And good psychologist don’t say they cure people, they say they help manage.

 

[Snowdrop]

I suspect they have just found a sophisticated way to discard patients that aren't getting better on their own.

This is most definitely an unknown area that is being badly explored/manipulated.
When I was less severely ill my symptom presentation was less consistent. For no reason that could be discerned from the environment I would have better and worse times. Yes there was the issue of going beyond my energy envelope. But even staying within it I could be better or worse over long stretches of time (relapse and remit?).

So for those patients that improved if they are in the mild/moderate category they could present differently over time. And it would have nothing to do with treatment. No amount of research without proper science will be able to sort this out in any meaningful way.

I do still occasional get symptom reduction but it's likely to last only an afternoon and is very rare.

 

[Cheshire]

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?)

On the other hand, P White is pleading to fill the gap between psychiatry and neurology, but that seems only to put a grasp on a wider field for psychological psychiatry.

That would also be useful to talk with patient: "no you don't have any psychiatric issue, it's neurological, and for that kind of neurological problem, cognitive therapies are the best" No more need to lye to the patient!! Psychiatry is a muddled word, let's replace it by one the patient can accept!!

 

[alex3619]

Its not about treatments being brand psychological, psychiatric, or neurological. The claim that this is about the stigma of a psychiatric diagnosis is unfounded - its simply assumed, and gosh, horror!, it could not be because we see that CBT/GET for ME is pseudoscience.

Few doubt that some CBT can help us cope with various issues. Its the hyped claims that are the problem.

We do need a merging of neurology and psychiatry. I think what will come out of that is neurology will dominate, and what is left of psychiatry will become psychological counseling.

One of the things these proponents do is use language, I think deliberately, that has multiple meanings. The result is that people interpret how they want, and the grandiose and unfounded claims do not get challenged. I do not think this is coincidence. Its what has worked for them for decades. The PACE trial clearly demonstrates this in action, especially if you start looking at press releases and media interviews. Also look at the deliberate misuse of "functional", and how that misuse is promoted. Tell patients their illness is functional. They think that means something is wrong with their function. The psychs use it as code for psychiatric.

We have a disease that is debilitating, confusing, counter-intuitive, isolating, demoralizing etc., and for which poor or abusive medical treatment sometimes induces anything from anxiety to PTSD. There is huge scope for the beneficial use of appropriate psychiatry, psychology and counseling. What do we get instead? What we think is right is wrong, and even though exercise makes us worse we need to do it anyway. Research into other aspects, such as isolation, suicide, cognitive strategies to cope with poor memory and concentration, are lacking for the most part.

 

[Cheshire]

Its not about treatments being brand psychological, psychiatric, or neurological. The claim that this is about the stigma of a psychiatric diagnosis is unfounded - its simply assumed, and gosh, horror!, it could not be because we see that CBT/GET for ME is pseudoscience.

I agree with you but think that there is effectively something specifically stigmatizing with the so-called "somatoform disorders". It implies that there's nothing wrong physically with us, we're imagining or emphasizing our symptoms, that we are just not able to see the difference between ordinary physical sensations and abnormal ones.
I don't think there's such a deny of symptoms in depression or bipolar disorder.

We do need a merging of neurology and psychiatry. I think what will come out of that is neurology will dominate, and what is left of psychiatry will become psychological counseling.

I wasn't clear enough (and my english prevents me from expressing as acurately as I would like). I totally agree, we need to merge psychiatry and neurology, undo this 19th century separation. Both are dealing with the same organ. I was just saying that some psychiatrists will attempt to pull the sheet back towards themselves and assert that behavioural and cognitive elements are causative for lots of diseases.

 

[Simon]

I'm sure a lot of people know I'm a fan of the CMRC and think they do good work.

This section encouraged me and I don't suppose those that have dominated UK research for the last decades, and give the impression they have the illness nicely understood, will warm to this:

So, we have a condition with no known cause, that manifests itself in different people in different ways and severities, and at different times. It’s obviously a field that is ripe for discovery. But so far, for a variety of reasons, we haven’t been able to get these answers.

Part of the reason for the lack of answers in CFS/ME is that researchers haven’t been able to deliver enough high-quality proposals to funding bodies. By bringing a diverse group of researchers together at the conference, we hoped to generate new ideas and collaborations that could result in these high-quality applications.

New ideas often come from new people. Moreover, to progress and deliver excellent research we need to make sure we continuously build capacity ― support established researchers already working in the field and attract new ones to work on CFS/ME.

I think he's right about raising the standard of research too we haven't been well served by work done to date: much of that is down to poor funding, but not all of it.

the need to recognise that what causes CFS/ME might be different to what maintains it

That's a perfectly logical point. However, what I find interesting is that the idea that whatever triggers ME/CFS it is perpetuated by flawed beliefs and behaviour, or a cycle of inactivity and deconditioning, was robustly put to the test by the PACE trial.

Even using nonsensical definitions of recovery (where people could count as recovered with worse physical function than before their treatment started) PACE could only claim 22% recovered vs 8% of controls. You might expect wildly better than that if those ideas of what perpetuates the illness were right. (Note there was a very strong pateint/therapist relationship, suggesting patients were fully engaged in the treatment).

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.

Like Jonathan Edwards and probably everyone else, I found that comment disappointing. It also sounds to me like someone trying to square a circle and keep researchers of all different persuasions happy.

You might be interested in Stephen Holgate's fascinating talk to patients, where he talked about the different biological pathways involved in many 'single' illnesses eg 15 different causal pathways in breast cancer. He was advocating use of new 'omics technology (genomics, gene expression, proteomics, metabolomics) to probe the causal pathways in ME/CFS:

Or zip through his slide presentation New Inroads into Understanding the Mechanisms of CFS and ME
(quicker still, my blog on similar ideas he presented to Forward ME A Dozen Different Diseases? Stephen Holgate Calls for Radical Change in ME/CFS Research)

So while Stephen Holgate might be deliberately keeping all options open, his own interest appears focused on the biomedical. At least that's my interpretation.

 

[Sasha]

I think we see sometimes see this kind of 'sop to the psychiatrists' stuff from people who are actually on our side and truly accept that our disease is purely non-psychological and I'd like to know why they say it and if they're fully aware of the damage that they do to patients - and to their own reputations in the eyes of patients - when they do say it.

Seriously, these are questions I have. I'd like to know what's behind it because, like you, @Simon, that troubling sentence doesn't seem to reflect what I've read elsewhere of Prof. Holgate's opinions about ME and its nature.

Here's the context (my bolding):

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.

@Jonathan Edwards - was the bolded point really an emerging theme at the conference? Because if it was Prof. Holgate's job to summarise the conference and that was indeed an emerging theme that he had to mention through gritted teeth then that's one thing, but my impression from your conference summary was that the idea of a psychological component to the disease just looked... well... a bit nuts, as far as the delegates were concerned.

 

[CantThink]

...we're imagining or emphasizing our symptoms, that we are just not able to see the difference between ordinary physical sensations and abnormal ones.
I don't think there's such a deny of symptoms in depression or bipolar disorder.

You're right. A GP doctor once said this to me in a round about way - she said that I was hypersensitive to (normal) sensations in my body, so that to me they were (presumably) noticed/painful/unpleasant.... And to a 'normal' person they were there but were not noticed/ignored.

 

[Bob]

....what I find interesting is that the idea that whatever triggers ME/CFS it is perpetuated by flawed beliefs and behaviour, or a cycle of inactivity and deconditioning, was robustly put to the test by the PACE trial.

I think that's the only positive thing that will ever be said about the PACE trial on this forum!

You make a good point... The PACE trial does indeed lay to rest any ideas about ME/CFS being perpetuated by psychological factors and deconditioning etc., seeing as only a small minority (11-15% of participants) responded to treatment (in a non-blind, uncontrolled trial)...

And it lays to rest the idea that disability can be treated and reversed with CBT/GET... Seeing as CBT&GET failed to improve objectively measured physical disability by a clinically useful measure.

Strange how the results have not been promoted quite like that though!

Oh, and I always forget about the large (n=1643) investigation of England's NHS clinics (with Esther Crawley as lead author)... It found that CBT/GET do not improve self-report physical function in real world clinical settings... Quite a finding, considering that they are promoted as treatments to improve physical function! Strange how we never hear about these results.

 

[worldbackwards]

Oh, and I always forget about the large (n=1643) investigation of England's NHS clinics (with Esther Crawley as lead author)... It found that CBT/GET do not improve self-report physical function in real world clinical settings... Quite a finding, considering that they are promoted as treatments to improve physical function! Strange how we never hear about these results.

Cheers, I'd not seen this. It's always nice when they've spent too much money to bury something like this entirely - and interesting that, whenever the real world starts to flood in, it never looks quite so marvellous.

 

[Jonathan Edwards]

@Jonathan Edwards - was the bolded point really an emerging theme at the conference? Because if it was Prof. Holgate's job to summarise the conference and that was indeed an emerging theme that he had to mention through gritted teeth then that's one thing, but my impression from your conference summary was that the idea of a psychological component to the disease just looked... well... a bit nuts, as far as the delegates were concerned.

Certainly that was the view of some. I thought the emerging theme was that it was about time we focused on biology and forgot about words beginning with p.

 

[Forbin]

I think it's important to keep in mind the difference between the concept that psychological problems can cause the disease and the concept that the disease can cause psychological problems (and not just from emotional stress).

Part of Dr. Melvin Ramsay's 1986 definition of M.E. includes:

3. Cerebral dysfunction:

The cardinal features:

1. Impairment of memory
2. Impairment of powers of concentration and
3. Emotional lability

http://www.cfids-me.org/ramsay86.html

According to Wikipedia, Emotional Lability is synonymous with Pseudobulbar Affect, a neurologic disorder characterized by involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays.

Wikipedia:
Pseudobulbar affect is a condition that occurs secondary to neurological disease or brain injury, and is thought to result from disruptions of neural networks that control the generation and regulation of motor output of emotions. PBA is most commonly observed in people with neurologic injuries such as traumatic brain injury (TBI) and stroke, and neurologic diseases such as dementias including Alzheimer's disease, attention deficit/hyperactivity disorder (ADHD), multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), Lyme disease, PANDAS in children and adults, and Parkinson's disease (PD).

 

[jimells]

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.

Well, psychotherapists certainly raise my adrenaline levels, as well as whatever else changes when one gets royally pissed off! And certainly CBT is physical therapy, if one counts jaw flapping as exercise.

Part of the reason for the lack of answers in CFS/ME is that researchers haven’t been able to deliver enough high-quality proposals to funding bodies.

Where have I heard this before? Oh yeah, in every official statement by the NIH on why they won't fund research. How clever, they are all using the same talking points. How did that happen?

 

[jimells]

So while Stephen Holgate might be deliberately keeping all options open, his own interest appears focused on the biomedical. At least that's my interpretation.

Even so, a nagging question just won't leave me alone:

Would a conference report on brain tumors suggest, or even imply in any way, that psychobabble research should be pursued???

 

[snowathlete]

The tricky thing is that given the history and the politics, perhaps the quickest way to move things forward for real toward true biological research is to include everyone, shake everyone's hand and smile, not make enemies who can throw a spanner in the works and accept the need to compromise as a means to deliver overall progress until the position of the pyschobabblers is so untenable through true science that they disappear quite naturally (not out of the world unfortunately, but at least out of ME/CFS) without direct opposition. Certainly the last few decades suggest direct opposition isn't a great tactic.

But of course, somebody doing this, for the right reasons, also looks very similar in behaviour to someone with the opposite viewpoint who is trying to manage the perception of psyciatry and make it seem more mainstream, the same sort of thing that leads psychobabbler's attempts to portray themselves as genuine biomedical researchers of true science.

It can therefore be hard for us to tell the difference, as it must be for the opposition too. Part of what I hear, I like, the other part, I don't like. So I remain on the fence, cautiously hopeful.

 

[jimells]

The tricky thing is that given the history and the politics, perhaps the quickest way to move things forward for real toward true biological research is to include everyone, shake everyone's hand and smile, not make enemies ...

This is certainly a plausible strategy and a reasonable attitude for reasonable people to assume. One thing that makes that approach look reasonable is to have crazies like me to rant and keep the heat turned up. Kinda like the old "good cop/bad cop" routine...

As always, comforting words from Dear Leaders are easy. It's the actions I'm interested in.

 

[Bob]

Here's Holgate's blog on the MRC's website, in case anyone wants to click through to demonstrate that there is interest in the subject:
www.insight.mrc.ac.uk/2014/11/12/encouraging-new-ideas-for-cfsme-research/

 

[Esther12]

The tricky thing is that given the history and the politics, perhaps the quickest way to move things forward for real toward true biological research is to include everyone, shake everyone's hand and smile, not make enemies who can throw a spanner in the works and accept the need to compromise as a means to deliver overall progress until the position of the pyschobabblers is so untenable through true science that they disappear quite naturally (not out of the world unfortunately, but at least out of ME/CFS) without direct opposition. Certainly the last few decades suggest direct opposition isn't a great tactic.

It depends what you mean by 'moving forward'. If the price for more useful research is turning a blind eye to the bad biopsychosocial stuff, then it's a price that's not worth paying imo.

 

[snowathlete]

It depends what you mean by 'moving forward'. If the price for more useful research is turning a blind eye to the bad biopsychosocial stuff, then it's a price that's not worth paying imo.

That might be the price that some involved decide to pay, but that doesn't mean that others can't oppose the bad biopsychosocial stuff. Arguably those opposing it might have an easier time due to new useful research being generated that progresses things.

But I hasten to point out that I'm not saying this is what is happening, I am simply raising one of many possible interpretations and I'm not saying it is my ultimate interpretation either; I tend not to arrive at solid opinions like that regarding such things. It's too much of a lottery trying to guess other people's motives and to further my analogy of sitting on the fence - it is a rickety old thing, swaying in the wind to either side, and who can say which side it will eventually fall? I certainly can't tell yet from being perched up here.

 

[alex3619]

Oh, and I always forget about the large (n=1643) investigation of England's NHS clinics (with Esther Crawley as lead author)... It found that CBT/GET do not improve self-report physical function in real world clinical settings... Quite a finding, considering that they are promoted as treatments to improve physical function! Strange how we never hear about these results.

Quickly looking at this study it was into NHS clinics, and they comment they did not use the CBT/GET as promoted by PACE which got better physical functioning. Of course they make the usual mistakes. I have not read the full study, but the brief look I made was that there was no mention of cohort heterogeneity, no discussion of the outcomes being primarily subjective, no discussion of placebo responses, no discussion of the statistical and other errors in PACE etc.

One of the problems with PACE is it cannot really be shown to have proven that CBT/GET does not work on ME, only that it failed to show it does work, which suggests the null hypothesis is more valid. While the highly heterogeneous cohort in PACE can be used for a claim the study is not valid, this also can be used for a claim that it did not really test CBT/GET on ME. Their use of a modified ME definition further complicates this.

Edit: http://qjmed.oxfordjournals.org/content/106/6/555.long

Although our analyses suggested that patients who received activity management did better than those who received CBT and/or GET, this was based on a comparison between three services offering activity management only and three services offering CBT/GET only.

As treatment content and adherence were not assessed, it is not known whether CBT or GET conformed to existing protocols or whether activity management provided content consistent with CBT or GET principles.