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

[Snow Leopard]

How many studies exist that talk about somatisation disorders among physicians? I don't know of any.

An interesting question for sure.

The thing is, somatization tends to be something that psychiatrists think exist, but physicians often do not.

JAMA. 1985 Dec 6;254(21):3075-9.
Somatization disorder. One of medicine's blind spots.
Quill TE.
Abstract
Patients with somatization disorders are frequently unrecognized and misdiagnosed. The diagnosis depends on recognizing a long-standing pattern of seeking medical intervention for vague, multisystemic symptoms, often without clear physical cause. These patients use symptoms as a way to communicate, express emotion, and be taken care of. Instead of recognizing the disorder and exploring psychosocial contributors to illness, nonpsychiatric physicians tend to repeatedly pursue organic possibilities through multiple tests, procedures, medications, and operations. In patients with somatization disorders, the dollar costs of this strategy are only exceeded by its potential for iatrogenic harm. More productive treatment strategies are presented, emphasizing the need for a long-term relationship with a primary care provider who will treat the patient and his symptoms seriously and respectfully but who is not compelled to invasively evaluate all symptoms.

http://www.ncbi.nlm.nih.gov/pubmed/4057529

Notice how the author is deciding on behalf of patients that the evaluation/desting is 'invasive' and iatrogenically harmful. Without actually ever asking patients how they feel about it...

 

[Esther12]

Just for completeness I thought that I'd put this here.

Sounds shitty to me.

CFS/ME conference reinvigorates the field

Researchers and patient representatives alike have hailed a conference on CFS/ME
(Chronic Fatigue Syndrome, Myalgic Encephalomyelitis) in September as a great success.



The UK CFS/ME Research Collaborative (CMRC) conference took
place in Bristol in September and brought together more than 70
researchers and clinicians, featured presentations from MRC-
funded researchers and hosted a workshop involving around 60
patients, carers and practitioners in roundtable discussions and
Q&As with researchers.

The CFS/ME Research Collaborative was formed in 2013 with the
aim of providing a mechanism for CFS/ME charities, researchers
and clinicians to work together to take the field forward.
Professor Stephen Holgate, Chair of the CMRC and also of the
MRC’s Translational Research Group, said: “By bringing together
such a diverse group of researchers, we feel confident that we’ve
reinvigorated the CFS/ME research field and found some new
ways to progress. We hope to use the conference as the basis of
future plans for increasing the profile of, and investment in, CFS/
ME research.”

Emerging themes from the conference 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.

Find out more about the outcomes
of the conference on our blog:

mrc.io/1sHdFXu


Learn more about the collaborative:

mrc.io/1B96vVs

https://www.mrc.ac.uk/publications/browse/network-winter-2014-15/

 

[worldbackwards]

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.

Nob.

 

[A.B.]

and the need to understand that diseases may not necessarily be either biological or psychological but may, in fact, be both.

That's what a quack wanting to sell psychotherapy would say.

 

[worldbackwards]

That's what a quack wanting to sell psychotherapy would say.

I know. What does it even mean? It's gibberish.

 

[Simon]

Emerging themes from the conference included: the need to understand that diseases may not necessarily be either biological or psychological but may, in fact, be both.

Sounds rather like politician talk, but maybe work presented at the conference backed up this claim?

Certainly results from PACE (not on the agenda), which explicitly based CBT/GET on the hypotheses that mecfs is perpetuated by flawed illness beliefs and behaviours, would suggest that the disease wasn't psychological - at least that's what the null result at long-term follow-up implies to me.

Meanwhile, Goerge Davey Smith presented a cracking headline talk at the conference:

Sadly the sound quality is dreadful, but a write-up is on the way.

 

[Esther12]

@Simon: That was actually coverage of the 2014 conference (I only just read it, so thought I'd post it here).

It worries me that it sounds like political talk tbh. Too easy to sacrifice patients' interests for some comfortable compromise amongst those with power and influence.

 

[shahida]

Im think that the bottom line with this collaborative is that there'll be some proper research and some psychio research. Not ideal but ive been ill so long with this now that i feel that something is better than the nothing we've had for decades. I think we just need to take this on board in terms of expectations.

 

[SOC]

Im think that the bottom line with this collaborative is that there'll be some proper research and some psychio research. Not ideal but ive been ill so long with this now that i feel that something is better than the nothing we've had for decades. I think we just need to take this on board in terms of expectations.

I can't agree. Bad research is doing us harm. It's not a question of something is better than nothing. Nothing is better than more bad so-called science about psychological factors in ME. I'd rather they just shut up for a while and wait until they can produce solid, current biomedical research than that they produce 50% outdated possibly biomedical research and 50% psychogenic bullshit on the "it's better than nothing" principle. Sometimes nothing is better, at least for a little while. Sometimes it's necessary to step back, take a deep breath, and look at the bigger picture before you rush to action.

 

[Sean]

The best way to clear muddied waters is to stop stirring them up and let them sit.

 

[shahida]

I can't agree. Bad research is doing us harm. It's not a question of something is better than nothing. Nothing is better than more bad so-called science about psychological factors in ME. I'd rather they just shut up for a while and wait until they can produce solid, current biomedical research than that they produce 50% outdated possibly biomedical research and 50% psychogenic bullshit on the "it's better than nothing" principle. Sometimes nothing is better, at least for a little while. Sometimes it's necessary to step back, take a deep breath, and look at the bigger picture before you rush to action.

what i meant was that in this collaborative there'll be good biomedical research undertaken but there'll also be psycho bs as holgate wants to keep everyone happy. Not ideal at all but it's about time our governement put some money into this disease.Then when the good research comes through hopefully the bs will go away

 

[Esther12]

A lot depends on the specifics, which we don't have access too, but it could be that we'd be better off with no UK research into ME/CFS for the time being. The bigotry and quackery we've seen from the UK has made things worse for patients around the world, and Holgate et al. seem more interested in making excuses for it and blaming patients for the animosity it has resulted in than apologising. A little bit of okay research is not going to balance the books imo.

 

[A.B.]

There's also the risk of biomedical research findings being misrepresented as supporting some whacky psychogenic illness theory. This has already happened to some degree with the HPA axis findings.

I don't trust any research made in a setting that tolerates psychobabblers.

I also don't see how psychobabblers could contribute anything useful at this point. Giving them influence only allows them to sabotage the research efforts that threaten them.

 

[medfeb]

I listened to Holgate's opening remarks for the MRC in October where he talks about the IOM criteria.

at minute 4:30
He described the IOM criteria and said

"It is very similar to other descriptions but I think its been slightly refined in some of the areas.
But the nice thing about that to me is that it is an inclusive definition, an inclusive description. And that means if we are going to explore this as a stratifying disease, different diseases, then we have to think about it in terms of capturing the whole population."
​

It sounds like he Is advocating for the IOM criteria (or some broad other criteria) for research. Am I understanding that correctly?

Assuming so, that raises a few red flags - e.g.
The IOM criteria are intended for clinical use, not research. Even for clinical use, Jason, Peterson, and others are concerned with the diagnostic accuracy of the criteria because of e.g. lack of exclusions and the lack of operationalization on how they are applied.

And the idea of encompassing "the whole population" and then stratifying could take us down another rathole in the way that Fukuda did.

What am I missing?

 

[Valentijn]

Then when the good research comes through hopefully the bs will go away

I'm sorry, but it doesn't work this way. In fact, BPS practitioners have quite recently made attempts to get entrenched in MS and other diseases, long after they've been completely accepted as non-psychological.

Any disease with multi-system involvement is at risk of increased rates of false positives for depression and anxiety when researchers use inappropriate questionnaires. Basically they use those questionnaires to "prove" that some illnesses supposedly result in excessive symptoms or mood disorders, compared to other illnesses (which not-so-coincidentally have far fewer symptoms).

Bad BPS practices cannot simply be ignored. They will continue to haunt us and other patient groups until they are thoroughly debunked.

 

[shahida]

A lot depends on the specifics, which we don't have access too, but it could be that we'd be better off with no UK research into ME/CFS for the time being. The bigotry and quackery we've seen from the UK has made things worse for patients around the world, and Holgate et al. seem more interested in making excuses for it t blaming fpatients for the animosity it has resulted in than apologising. A little bit of okay research is not going to balance the books imo.

Who's in this collaborative: we have the good guys as well as the not so. We have ME RUK in that group. We also have charles Shepherd. at previous meetings they've had Dr Newton. prof Lipkin speak etc. These proper researchers are hardly doing 'okay' researcj- MERUK is one of if not the oldest proper biomed' groups in the UK.
But realistically there'll be crap as well.
It's a battle. We need that battle to commence NOW. We deserve it.
At least let's have some faith in the likes of MERUK to fight our corner,
The day when there's nothing but proper biomed' research is a fantasy that aint going to happen. It doesn't work like that either. or we'll just be lying around as the decades fly by commenting on PR
check this out-p.10-11
http://issuu.com/meruk/docs/breakthroughautumn2013?e=1763011/5324793
or as pdf:
http://issuu.com/meruk/docs/breakthroughautumn2013?e=1763011/5324793

 

[Esther12]

At least let's have some faith in the likes of MERUK to fight our corner,

There are people who I think are doing some good work, but I still don't think we should have 'faith' in them. I appreciate your point of view, and was more positive about the CMRC when it was first announced, but most of the details we've had since then have made it seem worse than I expected, and potentially worse than nothing.

I am a bit worried that some long-term campaigners/groups are so desperate to have been able to 'achieve' something positive that they're willing to turn a blind eye to negatives which outweigh the positive. It is hard to say though, as currently we're being kept in the dark - without faith, that dark is not cheering.

 

[shahida]

There are people who I think are doing some good work, but I still don't think we should have 'faith' in them. I appreciate your point of view, and was more positive about the CMRC when it was first announced, but most of the details we've had since then have made it seem worse than I expected, and potentially worse than nothing.

I am a bit worried that some long-term campaigners/groups are so desperate to have been able to 'achieve' something positive that they're willing to turn a blind eye to negatives which outweigh the positive. It is hard to say though, as currently we're being kept in the dark - without faith, that dark is not cheering.

Actually i don't fully get what they do because they don't actually fund research, just sort of get people together. But those groups do what they do outside of the group anyway. who knows what will come of it.

 

[Esther12]

Actually i don't fully get what they do because they don't actually fund research, just sort of get people together. But those groups do what they do outside of the group anyway. who knows what will come of it.

Did you see the recent Holgate comments about demanding patient groups appologise for something (we don't know what)? It does seem that the CMRC is being used to restrict the freedom of patient groups to speak out against poor quality work, and the researchers who are making life worse for patients.

 

[shahida]

Did you see the recent Holgate comments about demanding patient groups appologise for something (we don't know what)? It does seem that the CMRC is being used to restrict the freedom of patient groups to speak out against poor quality work, and the researchers who are making life worse for patients.

That's interesting Esther and intriguing- i know nothing of this but i'm too ill to be fully cognizant of all that's going on, being low end of moderate.(Actually i shoudn't really be on here now- that'll be another night of not getting to sleep till 2.30 am!)
I don't know maybe i just need to be optimistic about something because i need this life to turn into something like, you know, a life.