• Phoenix Rising needs funds to operate: please consider donating to support PR

UK Research Collaborative Conference in Newcastle: 13th - 14th October

Messages
129
Likes
540
I am absolutely exhausted, attended the afternoon session yesterday, saw Dr Edwards speak, all I can say is that I was impressed, but I know nothing about him, his previous work...as someone with 33 years of Ramsay-ME, I have a highly developed BS detector and it seemed to me that they are studying the mechanisms of PEM, is this not a good thing? I did not absorb all of what he said as I had already listened to prior speeches and was exhausted after travelling, but I hope this is £600 000 well spent.
 
Messages
129
Likes
540
...to add all I can say as someone who despises what psychiatry/BPS model has done to pwME, I felt comfortable with what Dr Edwards was saying, but don't ask me now what that was, sorry to be so vague but just giving my intuition when I was in the room yesterday... I can't read this thread at mo, but do realise there are concerns about 'functional'...just trying to put a positive spin on things...
 
Messages
5,256
Likes
32,001
I was pretty comfortable with Marks Edwards' presentation at the conference, if not bowled over, but when I got back and logged onto PR I was perplexed why everyone was up in arms. Quite apart from his back catalogue, it seems to be down to the announcement that AfME made on Facebook. The quotation in the middle came from the conference presentation but AfME slipped in the sections I have bolded. Treatment interventions weren't mentioned at the conference. He seems to favour CBT for functional neurological symptoms.
I am optimistic.
 

Scarecrow

Revolting Peasant
Messages
1,904
Likes
5,333
Location
Scotland
...to add all I can say as someone who despises what psychiatry/BPS model has done to pwME, I felt comfortable with what Dr Edwards was saying, but don't ask me now what that was, sorry to be so vague but just giving my intuition when I was in the room yesterday... I can't read this thread at mo, but do realise there are concerns about 'functional'...just trying to put a positive spin on things...
Nasim, FWIW I had exactly the same impression as you about Mark Edwards.

And, yes, that word 'functional' certainly is a hackle raiser. So hard to know what someone really means by it
 

Aurator

Senior Member
Messages
625
Likes
3,071
When I said that people were trying, for the most part, to find biological mechanisms of disease I was speaking about research (academic) psychiatry. Functional/psychosomatic medicine is obviously a different story, it's essentially the ghetto of medicine where psychobabble and magical thinking is rife.
Is there never cross-fertilisation between the two? I'd assumed there was.
Billions upon billions have been spent on biomedical research to try and figure out what causes these brain diseases but not much progress has been made because the human brain may not be smart enough to figure itself out. These problems are actually excruciatingly difficult.
What is there in what we know so far about ME/CFS that tells us it's prudent, from a PWME's perspective, to prioritise another £600k for this kind of research?
 

Large Donner

Senior Member
Messages
866
Likes
3,847
The guy awarded this grant is a neurologist, not a psychiatrist.

I'm sorry if you've been traumatised by quackery but that doesn't make all psychiatry evil.
Yes but he is a neurologist who pushes flawed notions of "functional neurological disorders" one only has to read some of his stuff and the people he cites its shocking.

Where did you get the notion that I had "been traumatised by quackery". I'm sorry I really feel this is quite a cheap response to my post.

Yes, CBT and all sorts of bullshit is used daily in clinics all over the world. There are no better treatments at present.
Huh....!! How do you square this with the PACE study as one example of many, should we be subjected to GET and CBT as a proclaimed treatment because, "There are no better treatments at present"? Oh dear.

You are conflating what happens in the clinic with what's happening with people trying to come up with better explanations and treatments.
Don't you think what happens in the clinics is justified using "evidence" from poor studies, flawed studies, misrepresentation of data, conflicts of interests etc etc. Clinics are the downstream consequences of studies.

Billions upon billions have been spent on biomedical research to try and figure out what causes these brain diseases
That's highly questionable. At best they may take a look at the downstream effects of a condition and come up with some "justification" for CBT or the latest psychotropic drug. Makes you wonder whats happened to the "billions upon billions" of mostly tax payers money.

Thats exactly why Edwards has been brought into this MRC project its not to legitimise biomed studies its to legitimise the claim that the MRC is spending money on biomed studies when they are not. Yes they may throw some peanuts at the odd one but just watch how they spin them once they have his study published and "proof of the mental illness that exists in ME".

This is exactly what the National hospital does in London and he is definitely in with the National. Just take a look at this appalling link if you dare its truelly awful.

http://www.acpin.net/archive/Resources/ME - Functional Neurological Disorders.pdf

t's not for the lack of trying or malice or conspiracy or wanting to "drug children" or whatever.... but not much progress has been made because the human brain may not be smart enough to figure itself out. These problems are actually excruciatingly difficult.
None of this is an excuse for continuing with so called treatments and or studies that are at best useless and at worse harmful then continually backing them up with more deliberately flawed concepts as well as whilst ignoring biomedical proof that ones concepts are flawed.

Throwing in the "conspiracy" meme is problematic in response to critic of existing paradigms and status quo paradigms whilst over defending something which is obviously flawed from top to bottom.

Psychobabble isn't exclusive to psychiatry its used in other fields too as justification for lots of flawed ideas. However its route causes are in Psychiatry that's undeniable otherwise the range of people using it wouldn't be able to refer to the authority it has been given by the psychiatric profession.

This is how such utter nonsense forms the practice of things like the NICE guidelines, the public understanding of certain conditions, medical insurance justification, grant application/refusal, withdrawal of benefits, GPs understanding and referals, etc.

We could argue all day long over how many "good psychiatrists" there are and how many "bad ones" there are but the fact is its endemic that bad psychiatry has an enormous effect on all of the things I mentioned above and its effects are still deeply ingrained in the public consciousness and there are no shortage of Public Relations psychiatrists willing to continue the meme purely because of their own personal interests.

By the way, why do 5 million US school kids go to school on psychotropic drugs everyday by order of the state with their parents at risk of being accused of medical neglect if they refuse the drugs and intervention from CPS. Is it because there are no better treatments at present".

How exactly did we get to that point?
 
Last edited by a moderator:
Messages
129
Likes
540
...sorry, I should clarify just in case of confusion I am referring to Dr Mark Edwards' presentation (not Dr Jonathan Edwards' commentary on here), I am getting kind of confused with the replies ...honestly, my head is gone, gone, gone - no idea what I am saying... This must be the most garbled thread anyone has ever written! PEM in action, apologies...!
 
Messages
5,256
Likes
32,001
Dr Edwards I had previously asked you on another thread to explain why you didn't agree with the IOM decision that the Oxford criteria should be retired. You promised to get back to me but I believe you must have been quite busy so I never really got a full explanation to why you think its still credible to use the oxford definition.

Perhaps now would be a good time to put it into context in light of the fact that the MRC has awarded 600k to Mark Edwards to study "functional neurological disorders". Would it be okay for him to use the oxford criteria in this study just as it appears it was in the PACE study? Who is likely to stop him using it? Will you publically condemn him if he proposes to use it or after the study is published it appears he has used it.

Johnathon Edwards Quote:


Can you explain how this differs from the Wessely school stress loop learned behaviour theory, especially as Mark Edwards has no shortage of literature (most of which has been linked in this thread) talking about how he promotes false illness beliefs theory and he talks of the work of Johnathon Stone and how he appears to be some kind of mentor to him or at least his approach.

Johnathon Stones "publications" are an appalling rambling of medieval psychobabble rambling.
I think I explained why I thought the Oxford criteria were legitimate at the time. It is legitimate to use whatever set of criteria fit the clinical, physiological or pathological problem you are trying to address. We had an excellent epidemiologist at the meeting yesterday who emphasised that getting worked up about criteria is a waste of time. The important thing is to have some criteria, stick to them and document as well as you can and to use criteria that are relevant to the particular question you are asking. Now I quite agree that the Oxford criteria may be entirely inappropriate for lots of things they have been used for. However, when it comes to PACE there is no problem if the objective was to study the benefits of treatments in such a broad group.

In short I do not think choice of criteria has much to do with quality of science.

I don't know whether my interpretation of Edwards's aims differs from a Wessleyan stress loop - I am not sure what that is. But it would not bear any relation to childhood trauma or likely benefit of CBT. CBT wouldn't help you forget how to walk for instance.
 

Sidereal

Senior Member
Messages
4,854
Likes
17,257
What is there in what we know so far about ME/CFS that tells us it's prudent, from a PWME's perspective, to prioritise another £600k for this kind of research?
Certainly not if you ask me. I'm very disappointed by the MRC's decision to fund this study. Imagine what 600k could do to progress rituximab research in the UK.

Huh....!! How do you square this with the PACE study as one example of many, should we be subjected to GET and CBT as a proclaimed treatment because, "There are no better treatments at present"? Oh dear.

Don't you think what happens in the clinics is justified using "evidence" from poor studies, flawed studies, misrepresentation of data, conflicts of interests etc etc. Clinics are the downstream consequences of studies.
I've certainly never defended CBT or GET for ME. Obviously they're useless at best and harmful in many cases. How did ME come into this discussion? You were talking about psychiatric conditions. I don't regard ME as a psychiatric condition. CBT is used for stuff like depression and anxiety because it shows some modest (very modest) benefit in those conditions. If a medication were developed tomorrow that cures those conditions, it would be used instead of CBT.

By the way, why do 5 million US school kids go to school on psychotropic drugs everyday by order of the state with their parents at risk of being accused of medical neglect if they refuse the drugs and intervention from CPS. Is it because there are no better treatments at present".
What is your preferred solution? Leave children with ADHD, conduct disorder, depression etc. unmedicated?
 

alex3619

Senior Member
Messages
13,801
Likes
37,629
Location
Logan, Queensland, Australia
What is your preferred solution? Leave children with ADHD, conduct disorder, depression etc. unmedicated?
I think in most cases leaving them unmedicated is indeed the preferred solution. There will be some cases that involve extreme symptoms but diagnostic creep has meant that far too many are being considered to have medical problems. Many disorders, especially psych disorders, and not just CFS, have become wastebasket diagnoses.

Many psych conditions have limits or resolve on their own. Such as many cases of depression. Others do not. Mass medication risks inappropriate diagnosis followed by treatment, followed by side effects in children who did not need the medication in the first place.

"Functional" is a massively overloaded term with multiple meanings and shades of meaning. Its common use in neurology and psychiatry is basically "psychogenic". In biochemistry it is about how things work. The field to some extent determines the meaning. When there is potential confusion it is the responsibility of the speaker or writer to disambiguate. When they do not its justified to suspect they mean psychogenic.

No psychogenic disorder has ever been proven to exist. Many disorders labelled psychogenic do exist, but they are presumed, and not proven, to be psychogenic.
 
Last edited:
Messages
5,256
Likes
32,001
Putting aside problems with psychiatry/cbt/cfs/etc, isn't it a bit pointless to compare brain scans from people when they've been ill to when they've recovered while we have such a poor understanding of the cause of their ill health, as there are likely to be many changes in the way their brain functions in such different situations that we won't know if any led to recovery, or if they're all a result of recovery.

It seems really likely that they'll find that those who feel recovered have less activity related to stress/tension/attentiveness to symptoms/'gating'/etc, and that this will then be used to further justify manipulating patients in order to reduce their stress/tension/attentiveness to symptoms/'gating'/etc.

I realise I'm just going off a v brief summary of the study design and don't really know what I'm talking about (I'd planned not to comment on any of this stuff until I knew more - whoops), but if there's any truth to the idea that the plan is to compare bran scans of people who report improving/recovering with others, then this seems like a really crap idea. Also - this group may have different problems to those who don't recover, etc, etc.
If there is a plan to look at changes after recovery I think your qualms are very reasonable. I am not sure that it would be a waste of time - if the investigator had an open mind and kept an eye out for unexpected findings. But there is no doubt that if fMRI is as good as it is cracked up to be at imaging thinking then it is pretty obvious that people who say they are better will have different fMRIs because they will be thinking different thoughts - in some way or other.

It is maybe worth mentioning that the '300msec negative spike' that has been touted as the signature of thoughts entering consciousness has recently been shown probably just to be the signature of a psychology experiment subject noticing something they think they are supposed to notice in the experiment. It looks as if a lot of fMRI changes are due to thoughts sparked off by perceptions rather than perceptions themselves. So there is a danger of just the sort of confirmation of a bogus idea you suggest. On the other hand with time someone clever enough should do what a post doc in Cambridge did for the 300msec spike - a control experiment that showed that it was not what it was supposed to be.
 
Messages
5,256
Likes
32,001
@Jonathan Edwards, will the MRC have some sort of announcement of Martin Edwards's grant somewhere, with a summary description, given that they're the major funder?
These days proposals like this tend to be available to public view on some sort of ethics committee or registry site - but the USA may be more strict about this than we are. It might come up on a Google search - or maybe once officially awarded.
 
Messages
5,256
Likes
32,001
...sorry, I should clarify just in case of confusion I am referring to Dr Mark Edwards' presentation (not Dr Jonathan Edwards' commentary on here), I am getting kind of confused with the replies ...honestly, my head is gone, gone, gone - no idea what I am saying... This must be the most garbled thread anyone has ever written! PEM in action, apologies...!
You are crystal clear, no worries!!
 

SOC

Senior Member
Messages
7,849
Likes
16,362
I have a highly developed BS detector and it seemed to me that they are studying the mechanisms of PEM, is this not a good thing? I did not absorb all of what he said as I had already listened to prior speeches and was exhausted after travelling, but I hope this is £600 000 well spent.
I guess time will tell. The research is going forward, for better or worse, so we'll know in a couple of years whether Dr Edwards is following his history of hysteria and the like or has made a sudden and unexpected right turn into solid biomedical research without any psychobabble assumptions in play. I'm not holding my breath.
 

Large Donner

Senior Member
Messages
866
Likes
3,847
Certainly not if you ask me. I'm very disappointed by the MRC's decision to fund this study. Imagine what 600k could do to progress rituximab research in the UK.



I've certainly never defended CBT or GET for ME. Obviously they're useless at best and harmful in many cases. How did ME come into this discussion? You were talking about psychiatric conditions. I don't regard ME as a psychiatric condition. CBT is used for stuff like depression and anxiety because it shows some modest (very modest) benefit in those conditions. If a medication were developed tomorrow that cures those conditions, it would be used instead of CBT.



What is your preferred solution? Leave children with ADHD, conduct disorder, depression etc. unmedicated?
I think then we agree on most things to do with the MRC grant to Edwards. Except I am confused over how to address you last question.

ME came into the discussion because I made the comment questioning what other form of psychiatry there was apart from armchair/armature.

Also because this thread is about a guy who has just got 600k from the MRC to study "functional neurological disorders" from a project which purports to be about funding the biomedical side of ME.

I agree this 600k is a waste of money at best and at worst its going to be used as"biomed" evidence to back up the PACE trial claims and the BPS model.

Moving away form the MRC issue and/or ME I have to say I simply don't go with reasoning like "its all we have right now" therefore it should be used regardless of the illness.

Where I see the flaw in the area we disputed is the assumption that something is a "mental illness" because someone says so.

Therefore I have difficulty answering your question...

What is your preferred solution? Leave children with ADHD, conduct disorder, depression etc. unmedicated
Its so problematic. The term "Leaving someone unmedicated", send shivers down my spine especially when the diagnosis are made on subjective grounds and the DSM is in control of many of such terms and they mean anything they want them to mean.

You have to consider who is doing the diagnosing who is doing the prescribing, who is doing the studies claiming such and such a drug "works" and that it has limited side effects. How about those who are dumped under the wrong labels who will then find it impossible to access the right care or the correct diagnoses once labelled as mentally ill.

There is also the issue of informed consent which somehow seems to disappear when it comes to parents decisions over how to deal with their kids conditions. This is so problematic when it comes down to CPS and the state.

Children "being left unmedicated" is exactly the accusation parents are faced with if they dare question the efficacy of giving certain drugs to their children. And the efficacy of many of those drugs is extremely dubious.

One only has to look at the scandal of how big pharma hid negative studies on anti depressants for kids in the order of something like 10 to 1 for every "positive one".

They even knew certain meds where causing suicidal tendencies and still covered it up. This was all done under the meme of "brain chemistry and biomedical science" as a justification to get the drugs to market.

What about the amount of people who are given a lazy arse diagnosis of depression when they have ME? Should they be "left unmedicated". Or should they be medicated, by whom? Who is the authority you refer to indirectly in the notion of "left unmedicated" presuming x or y or z person should be medicated.

It still comes down to me not buying into "its all we have right now so what we should use". I'm afraid the flaws in such a notion are visible for all to see.

On a side note if anyone ever told me I had conduct disorder I would thank them. I certainly wouldn't take meds for it.
 

Aurator

Senior Member
Messages
625
Likes
3,071
Still on the subject of Mark Edwards's contribution, I'm struggling to see in the passage taken below from his 2012 paper anything fundamentally different from what could be termed a psychogenic theory (I've bolded the salient bit). Am I missing a crucial difference that makes Edwards's theory emphatically not a psychogenic one?


"We wish to highlight here the notion of physical precipitating
factors in the generation of FMSS, something highlighted by
others, for example Reynolds (1869). It is notable that a physical
precipitating event is commonly reported close to the onset of
FMSS; and we believe that this provides an important explanation
as to why particular FMSS develop. For example, viral infections
commonly precede chronic fatigue syndrome or neurasthenia
(Wessely et al., 1998), somatic symptoms associated with panic
attacks are commonly reported prior to onset of non-epileptic
seizures (Rusch et al., 2001) and physical injury to a limb (causing
pain and immobilization) is commonly reported at the onset of
fixed abnormal limb postures or limb paralysis (Schrag et al.,
2004; Stone et al., 2009b, 2012a).

We suggest that salient sensory data arising from these precipitating
events are afforded excessive precision (weight), and that
this instantiates an abnormal prior belief at an intermediate level in
the cortical hierarchy trying to explain or predict those sensations—
and that abnormal belief or expectation is rendered resistant
to extinction through the unusually high levels of precision
(synaptic gain) enjoyed during its formation."