UK parliamentary meeting (APPG on ME). The MRC's attitude seems hopeful.

[Bob]

*Silverblade putson his John Clease Mode*

What has the British Medical Establishment Done For us?

They gave us...weasels!

Yes yes, ok, all right, they gave us the Weasel
What else have they given us?

A f** pain in the arse!

Sigh, all right, apart from, the Weasel and a pain in the...ahem, arse, what have the British Medical Establishment given us?

Graded Exercise Torture! Them bloody crosses and barbed wire bunnets are a RIGHT swine, I can tell you!

Grrr, ok, ok, apart from...Weasels, a pain in the posterior and graded exercise thingy...what has the british medical Establishment ever done for us, hm?


....

......


*crickets chirp*

Yes, yes, ok, you're right, they're a bunch of useless old git b*stards!
Well, now we've got that sorted out....right lads, off to the pub then?

Thanks for the light relief Silverblade!

Think I might have a break now. Should have got off this thread ages ago.

 

[Mark]

Wildcat has claimed to have "seen it all before" as far as the latest developments in the MRC and APPG are concerned.

I haven't read every set of minutes, parliamentary answer, and list of funded research, but I've looked at quite a lot of the history of MRC funding in the past, and I have never seen any MRC funded research that even remotely compares to the recent 1.5m funding round in terms of studying biomedical issues.

But more experienced advocates may be able to convince me that such a wholly negative reaction is anything more than hot air. So: if Wildcat, or anyone else, can identify previous MRC-funded research projects studying biomedical issues, to compare with the most recent announcements, then I could reconsider.

The latest MRC-funded projects study immune-related issues, autoimmune (Sjogren's) issues, they include a small trial of Rituximab, a mitochondria study, and more.

It is acknowledged that the criteria for inclusion (the definitions used) are likely to be less than ideal (we have little information about that and would like more if anybody has it), and it is acknowledged that the program is still far too small and certainly far from perfectly focused on the core issues.

But can anybody point to a previous round of MRC funding that has had a comparable number of biomedical research proposals? Indeed, can anybody point to any MRC-funded research that could be classed as serious biomedical research? I doubt it, but if - and only if - somebody really can point to such previous research, then Wildcat's assertion to have "seen it all before" would be accurate.

Unless and until I learn of such previous MRC funding of biomedical research, I'll continue to believe that the latest funding announcements represent a small but nevertheless positive and significant change of direction, and I'll continue to argue that ME advocates would be doing a disservice to us all if they failed to acknowledge and support such positive changes of direction. We can all agree that much, much more needs to be done, and that there are valid critiques to be made and further issues to be raised (especially criteria for inclusion in studies and the importance of study of the most sick patients), but the longest journey starts with a single step, and if we fail to support that single step we may well find ourselves going backwards again.

 

[Esther12]

Don't worry Esther... It's always nice to see you, bad mood or otherwise!

Sorry to hear you having a bad time with ESA forms.

Make sure you get a Weasle voodoo doll!

Thanks. The forms actually took less time than I expected, but the new systems pretty inherently disdainful, and seems likely to lead to greater financial difficulties... ah well: there are plenty of people in more difficult positions, and I've just had a few years of being quite fortunate.

I know exactly where you are coming from Esther, but my hope is that the PACE Trial was a turning point. I saw the entire ME community get so angry about the PACE Trial, with one single voice of condemnation, that I think we made waves. And I don't think it can get any worse than the PACE Trial. I think the authorities will now have to move on from the psycho-babble research, and I think we made people sit up and take notice of us. But maybe I'm being too optimistic, as I often am.

But like I said earlier, I don't rely on the UK, and I look abroad for research developments. There's no point in waiting for the UK to change. It seems that the most we can do it fight the consequences of the PACE trial for now, and wait until the next NICE review.

Honestly, it was just a relief to see the MRC talking about ME as if it is a real illness. That gives me some small hope that there might be other changes along the line. I don't know why this thread got so heated.

I think that there's a lot of justified anger about the way CFS has been treated, and a desire for those who have made mistakes in the past to be held accountable, rather than for patients to be told to feel more 'positive' about them.

With PACE, we did have widespread patient outrage.

At the start of the trial it was being claimed that patients with an SF36 score of 65 were severely disabled, and by the end of the trial those scoring worse at just 60 were being classed as recovered, cured and back to normal. Tate laid it out nice and clearly for people: http://www.mediafire.com/file/58xlwu12afj903x/PACE trial critique Dec. 02, 2011.docx
or
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112a&L=co-cure&T=0&P=1152

Yet most of the responses we got to our concerns seemed to present patients as just angry because they were opposed to psychiatry, scared of the stigma of mental health or simply anti-science. "You seriously think that 60 is lower than 65? How militant and unreasonable. We can't allow the prejudices of patients to distort the scientific process. Why aren't you grateful for therapies which are so successful at curing your condition? Don't you want to get better?"

I've not seen any indication that anyone in a position of power or authority cared about or even took the time to understand the legitimate concerns patients had about the way the results from the PACE trial were manipulated. (And then Crawley took it even further in a paper aimed at NHS commissioners, somehow claiming that 30-40% of patients recovered following CBT/GET in PACE).

I guess that means that I'm viewing the MRC's approach to CFS from a grimmer perspective than I used to, prior to PACE. Still... there are positive things to be found in the MRC, so maybe it would be better to focus on that that have me turn this into another rant about PACE (I've heard there's a long thread here about that already.)

 

[Bob]

Here's a list of the latest MRC funded studies, in case anyone hasn't seen them:
http://www.meassociation.org.uk/?p=9760

 

[SilverbladeTE]

Bob
hehe my pleasure, mate

 

[Bob]

Here are a couple of excerpts from the latest Invest in ME newsletter...

The first bit seems to be some positive news:

APPG for ME Meetings
Invest in ME were invited to attend APPG meetings by the new chair Annette Brooke MP - an MP whom we believe is intent on improving the situation.


I can't speak for you Wildcat, but maybe the next excerpt might help explain what you mean?:

The history of MRC funding of ME research has, for a generation, been such that patients have had no other choice but to be angry and question the false science being propagated by establishment organisations and vested interests. Biomedical researchers have not received funding and have been forced to leave the field as the MRC has only favoured behavioural studies.

Most of us know this already, but I thought it might be helpful to post it anyway.

 

[Wildcat]

.


Do you really believe that Professors Wessely, Chalder, Sharpe and Drs Cleare and Hotopf have let go of MRC funded CFS research? Think again:


Dr Carmine Pariante. Reader of Biological Psychiatry
http://rg.kcl.ac.uk/staffprofiles/staffprofile.php?pid=923
Qualifications
PhD (Psychiatry) (The in vitro effects of antidepressants on the glucocorticoid receptor and the potential relevance for the mechanism of action of this class of drugs) University of London

MD (Psychiatry) (Honours) University of Cagliari
BM (Medicine) (Honours) Gemelli University School of Medicine, Rome, Italy

School
Institute of Psychiatry

Department/Division
Psychological Medicine

Research Interests
Psychoneuroendocrinology, stress, immunity.

Publications
Research Students
Selected Research Funding

Showing current research funding
MRC
PSYCHOBIOLOGICAL SEQUELAE OF CUMULATIVE EXPOSURE TO VIOLENCE: THE ENVIRONMENTAL RISK LONGITUDINAL TWIN STUDY
2,738,755.00
03-OCT-11 to 02-OCT-16
Louise Arseneault, Avshalom Caspi, Andrea Danese, Jonathan Mill, Terrie Moffitt, Carmine Pariante
MRC

Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome.
373,075.15
31-AUG-12 to 31-AUG-15
Trudie Chalder, Anthony Cleare, Richard Dobson, Max Henderson, Matthew Hotopf, Valeria Mondelli, Carmine Pariante
WELLCOME TRUST
THE COLOMBO TWIN AND SINGLETON STUDY (COTASS) FOLLOW UP
246,263.00
01-JUL-11 to 30-JUN-14
Matthew Hotopf, Khalida Ismail, Peter McGuffin, Carmine Pariante, Fruhling Rijsdijk
Psychiatry Research Trust

Biological markers of susceptibility to depression among young adults exposed to maternal depression in utero
49,519.00
01-JUN-11 to 31-MAY-14
Sarah Osborne, Carmine Pariante, Susan Pawlby
Psychiatry Research Trust

How does childhood maltreatment lead to depression in adults? A molecular study on inflammatory and metabolic pathways using the South East London Community Health (SELCoH) sample
50,000.00
01-JUN-11 to 31-MAY-14
Avshalom Caspi, Andrea Danese, Stephani Hatch, Matthew Hotopf, Terrie Moffitt, Valeria Mondelli, Craig Morgan, Carmine Pariante
Academy of Medical Sciences

Where does the response to stress go wrong in psychosis? Measuring cortisol, cytokines, neuroplasticity markers and hippocampal volume in patients with first-episode psychosis and their healthy siblings
29,750.00
01-NOV-11 to 01-NOV-13
Paola Dazzan, Valeria Mondelli, Craig Morgan, Robin Murray, Carmine Pariante, Steven Williams
Wellcome Trust

The childhood adversity and psychosis (CAPsy) study.
519,148.00
01-OCT-09 to 30-SEP-13
Paola Dazzan, Philippa Garety, Craig Morgan, Robin Murray, Carmine Pariante
EUROPEAN COLLEGE OF NEUROPSYCHOPHARMACOLOGY
INFLAMMATION RELATED PATHWAYS IN FIRST EPISODE PSYCHOSIS: ROLE IN NEUROPLASTICITY AND BRAIN STRUCTURE
34,919.29
01-MAR-12 to 28-FEB-13
Paola Dazzan, Valeria Mondelli, Carmine Pariante, Patricia Zunszain
European Commission

Moodinflame - Early diagnosis, treatment and prevention of mood disorders targeting the activated inflammatory response system
386,803.18
01-NOV-08 to 31-OCT-12
Katherine Aitchison, Anthony Cleare, Matthew Hotopf, Carmine Pariante
EC - European Commission
Moodinflame - Early diagnosis, treatment and prevention of mood disorders targeting the activated inflammatory response system
386,803.18
01-NOV-08 to 31-OCT-12
Katherine Aitchison, Anthony Cleare, Matthew Hotopf, Carmine Pariante
UNIVERSITY OF LONDON (CENTRAL RESEARCH FUNDS)
RISK FACTORS OF PERINATAL MENTAL DISORDERS
2,110.00
01-JUL-10 to 30-JUN-12
Paola Dazzan, Mitul Mehta, Carmine Pariante
MRC

THE EFFECT OF PRENATAL STRESS EXPOSURE ON CHILD HPA-AXIS FUNCTION AND NEURODEVELOPMENT: A GENE-ENVIRONMENT INTERACTION STUDY.
57,550.00
01-OCT-09 to 30-APR-12
Carmine Pariante
PSYCHIATRY RESEARCH TRUST

THE IMPACT OF EARLY ADVERSE EXPERIENCES ON THE VULNERABILITY OF PSYCHOSIS.
225,070.00
01-APR-08 to 30-APR-12
Philip McGuire, Carmine Pariante, Lucia Valmaggia






Editing/Refereeing Activities

Editorships of Major Research Journals (National and International)

Associate Editor, Psychological Medicine
(2007 - Present)




~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





http://www1.imperial.ac.uk/departme...armacologyandtherapeutics/psychopharmacology/

Neuropsychopharmacology Unit



This is a newly created department that was founded by the appointment of Professor David Nutt to the Edmond J Safra Chair of Neuropsychopharmacology in December 2008.

The goal of the department is to pioneer research into neuro-psychiatric disorders merging pharmacological approaches with state-of-the-art imaging techniques. The particular emphasis is on brain disorders such as addiction dementia schizophrenia and affective disorders.



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


David Nutt

He served on the Committee on Safety of Medicines where he participated in an enquiry into the use of SSRI anti-depressants in 2003. His participation was criticised as, owing to his financial interest in GlaxoSmithKline, he had to withdraw from discussions of the drug Seroxat.
http://www.guardian.co.uk/society/2003/mar/17/mentalhealth.politics

 

[Bob]

Well I'm not sure why you've posted that material Wildcat?
Only one of those studies is related to CFS.

Have you actually read through it? Some of it looks like really good research.
The MRC is supposed to fund psychiatric research... And there's nothing wrong with that...
And most of this research is looking at the biomedical side of psychiatry... Looking for biomarkers etc.
It's the sort of thing we cry out for, for CFS/ME.

As for the Neuropsychopharmacology Unit, without reading further material, it looks useful.
I mean, people with psychiatric illnesses do need research into pharmaceuticals.
So I don't know why you've posted that either?

 

[Wildcat]

Well, remain optimistic and uncritical, Bob - if you don't know why I posted that material thats your loss - you don't appear to recognise the names Cleare and Hotopf - over and out for good - I am not prepared to waste any more of my precious energy on activism ....

 

[Esther12]

I think that the newly funded MRC studies are not bad attempts to study a diagnosis which is very difficult to study in a useful manner. In that regard, I'm positive about them. I still think that we should absolutely be critical about a number of other areas, and that the emphasis on the need for a 'positive community' without acknowledging the legitimate reasons for patient anger (or 'negativity') is pretty sickening and illustrative of the complacent manner in which the medical establishment seems to view CFS and patients with the diagnosis.

(Equally though - I entirely understand why some people want to focus more upon the positive aspects of the MRC's approach in this thread. If they'd prioritised this approach 15 years ago, maybe we'd be in a better place now).

 

[Bob]

Well, remain optimistic and uncritical, Bob - if you don't know why I posted that material thats your loss - you don't appear to recognise the names Cleare and Hotopf - over and out for good - I am not prepared to waste any more of my precious energy on activism ....

You've just totally misrepresented me again Wildcat.
You clearly don't know anything about me, so please can you refrain from posting personal remarks.

I've asked you a number of fair questions in this thread, and you've not answered any of them.
All you've done is a drive-by rant. With a few insulting remarks thrown in.

I don't have a problem with psychiatrists if they are investigating psychiatric illnesses. Especially if they are investigating biomarkers and other biomedical aspects of the psychiatric diseases. I only have a problem with psychiatrists meddling in the world of ME. So I can't see what the problem is with those studies. And yet again, you've been unable to enlighten me.

Just for the record, in case anyone thinks I'm 'uncritical' or 'complacent' about the medical establishment, then please search my history on phoenix rising.

Anyway, it's clear that we aren't seeing eye to eye Wildcat, so i think we should take a break from each other.

 

[Bob]

I think that the newly funded MRC studies are not bad attempts to study a diagnosis which is very difficult to study in a useful manner. In that regard, I'm positive about them. I still think that we should absolutely be critical about a number of other areas, and that the emphasis on the need for a 'positive community' without acknowledging the legitimate reasons for patient anger (or 'negativity') is pretty sickening and illustrative of the complacent manner in which the medical establishment seems to view CFS and patients with the diagnosis.

(Equally though - I entirely understand why some people want to focus more upon the positive aspects of the MRC's approach in this thread. If they'd prioritised this approach 15 years ago, maybe we'd be in a better place now).

Yes, I agree with all of that Esther.
(Except that not all the new MRC-funded studies look good. Only two or three of them look good.)

I have a strong sense of injustice as well.
But there's got to be space for some positivity and hope on the forum, as well as anger and frustration.

I know it's a constant battle against vested interests and ignorance to get things changed, and many of us work towards that change.

A lot of positive stuff is going on in the USA right now.
I know we are 30 years behind where we should be, but there does seem to be some honest progress over there.
The CDC kicked out Reeves (remember him?) and the new administration team seem to be working to make a genuine difference, according to what I read.

Yes, the PACE Trial was a kick in the teeth for us, but I'm still hopeful that it will work in our favour at the next NICE review.
We will kick up such a fuss and noise about it, that they won't be able to ignore the real results.

I'm not challenging Wildcat's sense of injustice, or her right to challenge the establishment.
On this thread, I've just been talking about what I see as one specific positive development.
In general, I think we would all agree that the whole situation is corrupt, unjust and appalling.
That's partly what motivates many of us to come to this forum, along with all the other reasons, right?

If Wildcat had engaged with me instead of ranting at me, then she'd know that I share her sense of injustice.

 

[Esther12]

I agree with what you say too bob (I didn't say they all looked good... just "not bad"). I reckon my soul can withstand the anger for now!

 

[Wildcat]

Criticism is not "anger", neither is it 'negativity'. I am not online to jump to answer your every question (being far too ill at present) - My essential points were to suggest that you consider previous MRC and APPG announcements and the results, so as to decipher/deconstruct the current proposals and MRC/APPG statements.

One point to consider is the statement (from the MRC) that ME is difficult to define - from an institution that has refused to use either of the two possible definitions (CCC or ICC).

 

[Bob]

My essential points were to suggest that you consider previous MRC and APPG announcements and the results, so as to decipher/deconstruct the current proposals and MRC/APPG statements.

One point to consider is the statement (from the MRC) that ME is difficult to define - from an institution that has refused to use either of the two possible definitions (CCC or ICC).

I agree with what you say about the CCC and ICC. It's essential that they use them in research.
I always watch the MRC carefully to see what they are doing, and I'm under no illusion about the nature of their past behaviour.
You seem to be assuming that we aren't critical of the MRC, but most of us are hyper-critical of the MRC.
The starting point for my opening post is that the MRC is a useless and corrupt organisation.
I assumed that that was a given, and that we all agree with that, and so it didn't need to be said.
And so I was just pointing out what I thought was a glimmer of hope, and a small move in a positive direction. That's all. You've read too much into it.

I am not online to jump to answer your every question (being far too ill at present)

You've hardly shared any information to back up what you've said.
So it might be more helpful if you posted factual information alongside your opinions. That helps people understand what you mean.


If i've been over-sensitive and misinterpreted your motives, then I apologise.

I thought you last post was constructive though.

 

[Min]

Professor Savill said that he believed very strongly in working closely with patient organisations

If they're working with AfME & the MEA we will have decades more of the Wessely school of psychiatry inappropriately dominating research and treatment for a physical illness. Our only hope is if they start listening to Invest in ME.

He finished by saying that he would like to counsel patience

I've waited 25 years whilst being offered nothing but psychobabble, negkect, abuse and contempt for this living hell of an illness.

 

[Enid]

Quite Min - listen/watch Invest in ME - the very best in the UK. Watch the new conference 2012 - not a psycho/mumbo jumbo in sight. (well Iime know the real thing). Most if not all the scientists from overseas.

 

[currer]

I suppose the reservation I have is that the current research is unlikely to be groundbreaking. Such small improvements are easily lost again. There has been an historical pattern of advance in the attitude to ME repelled by a counterattack from the psyches. I fear that these small studies may come up with mildly interesting findings, but they will not be enough to protect us from the next assault from the psychiatric campaign. And so ultimately they will be forgotten, not followed up.

So I agree with Bob and Wildcat here. Yes there is progress....but will it last?...will it be enough?

I will go up into the loft and find my old paperwork and see what the attitude was in 1998. I dont think much has changed.
I suppose some biomedical research is new...I think we have Judy Mikovits to thank for the change.

 

[Enid]

No reservations - the real scientists'Docs trying to understand and pull together regardless.

 

[Bob]

I suppose the reservation I have is that the current research is unlikely to be groundbreaking. Such small improvements are easily lost again. There has been an historical pattern of advance in the attitude to ME repelled by a counterattack from the psyches. I fear that these small studies may come up with mildly interesting findings, but they will not be enough to protect us from the next assault from the psychiatric campaign. And so ultimately they will be forgotten, not followed up.

So I agree with Bob and Wildcat here. Yes there is progress....but will it last?...will it be enough?

I will go up into the loft and find my old paperwork and see what the attitude was in 1998. I dont think much has changed.
I suppose some biomedical research is new...I think we have Judy Mikovits to thank for the change.

I agree with Wildcat's general attitude towards the medical establishment as well, but not on the specifc issue of this round of funding.
Long ago, I gave up expecting any major changes to happen in the UK any time soon.
I wasn't expecting the MRC to fund anything useful in this latest round of funding. I thought it would all be sleep studies etc.
So I was pleasantly surprised to see some proper biomedical research included. Really surprised.
But if you look at what's going on in the USA right now, there's a load of really good biomedical research in the pipeline.
And the CDC are changing their diagnostic criteria. I think they already insist that their research uses the CCC, if I remember that correctly.
So maybe things might be slowly shifting, esp in the USA.