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CMRC 2017 conference update: Look who’s flying-in next month!

Messages
13,774
Thanks!

I think belief in at least the possibility that the disease is physiological is absolutely crucial for a study such as MEGA.

I think that Crawley does think CFS can be 'physiological'. Classing it as 'physiological' doesn't need to mean much though, and imo is largely a distraction from the real problems with the way people like Crawley apporach patients. TraditionAlly there is an assocation between classing patient's health problems as 'psychological', and approaching them in a manipulative and 'paternalistic' manner, but there's also a lot of people who think that it's okay to treat those with 'physiological' problems in the same way.

Crawley's shown that she's a quack (see the links in my signature!) regardless of what she thinks is the likely cause of symptoms in CFS.
 
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2,087
hi @BurnA trying to educate myself here Ive had a look at the programme for days one and two and other than E Crawley the other presenters look to be involved in biomedical research rather than behavioural stuff or am I missing something?

Sometimes looks can be deceiving :)

If you search some of the names on these forums I am sure you will find more information on the speakers in question. A 'full day' may have been an exaggeration, but not too much.
 

Jan

Senior Member
Messages
458
Location
Devon UK
Maybe you weren't concentrating hard enough?

Or not even at the conference?

I though he gave an outstanding presentation to the Newcastle conference about both his immune function research and the clinical trials involving valganciclovir

Jose also came to the Workshop on Neuropathogy and made a very useful contribution, including collaboration with our UK post-mortem research group

CS

Main conference report:
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/


Summary of his presentation

Professor Jose Montoya, Stanford University, USA, opened the first plenary session on neuropathology with an outstanding presentation that commenced with a one-minute silent tribute to his close colleague and friend Dr Martin Lerner, who had recently died. Martin Lerner had worked with Professor Montoya on a number of research studies, including the use of antiviral treatment.

Professor Montoya also referred positively to the impact of the Institute of Medicine (IoM) report and is a supporter of the new IoM diagnostic definition for ME/CFS (or systemic exertion intolerance disease/SEID as is being recommended in the report) because he believes that clinicians need a simple and accurate way of making a diagnosis.

He believes that the new IoM definition, which emphasises post-exertional malaise and orthostatic intolerance, is preferable to the options – eg Canadian, Fukuda – that are currently available. Work from the Stanford group indicates that there is a strong (90%) concordance between Canadian, Fukuda and IoM definitions.

He then said that people with ME/CFS had been ignored and humiliated by the very people who were supposed to be helping them – the medical profession. In his own words….“I have a wish and a dream that medical and scientific research societies in the US apologise to their ME/CFS patients”.

Turning to treatment, Professor Montoya described how the publication of a flawed clinical trial involving acyclovir back in 1988 had led to the view that ME/CFS was not caused by EBV infection and that antiviral drugs do not have any role in the treatment of ME/CFS.

Despite this, he has been involved in a number of the clinical trials that have assessed the efficacy and safety of the antiviral drug valganciclovir.

This is a treatment option – involving a lower dose than is normally used in other situations and over a prolonged period of time, at least 6 months, possibly much longer – that he now uses for some ME/CFS patients with considerable success.

In addition to antiviral activity and reduction of latent HHV-6 replication, he believes that this drug may have immunomodulatory effects in ME/CFS as well (as it can decrease the level of white blood cells called monocytes and reduce microglia activation in mice).

[CS note: During the discussion that followed I pointed out that here in the UK antiviral treatment is not recommended by NICE – so antiviral drugs are seldom used in ME/CFS and very little interest has been shown in further research or clinical trials involving antiviral treatment. The ME Assoxciation has met with Roche, the pharmaceutical company that makes this drug, but we did not have any success in trying to set up a UK clinical trial. We clearly need an independent randomiaed placebo-controlled trial to assess the value of valganciclovir in ME/CFS.]

Professor Montoya then described some of the other research that his multidisciplinary group at Stanford are carrying out on a large group of ME/CFS patients, along with healthy controls, with the help of a $5 million anonymous donation. In particular:

• Immune function studies that are looking at the response to infection with various organisms. In particular, the role of immune system chemicals called cytokines, how the cytokine pattern changes over time (less or more than 3 years – the Hornig/Lipkin study), as well as daily fluctuations in cytokines relating to activity levels. To do so they can measure over 50 individual cytokines and have access to a cohort of around 200 ME/CFS patients and 400 controls. Proposed research at Stanford will also involve a detailed study of the role of NK cell status and function in ME/CFS.

• Virology studies examining the role of latent herpes viruses including EBV and HHV-6 and how low NK function may be maintaining HHV-6 activation in ME/CFS. Professor Montoya also referred to research involving Torque viruses. CS note: Torque teno virus is considered to be a relatively new global marker of immune function and the more immunosuppression occurs, the higher the level of torque viruses. Professor Montoya pointed out that torque viruses have been found to be lower in ME/CFS – adding further support to the role of immune system activation in ME/CFS.

• Neuroimaging studies looking at both grey and white matter in the brain – one of which has used diffusion tensor imaging, an MRI based technique that can visualize location, orientation and anisotropy of white matter tracts in the brain. This study has recently been published and described a very significant structural abnormality involving the right arcuate fasciculus. This structure contains fibres which connect different areas of the brain. The fibres are thicker in ME/CFS than in healthy controls and the inference is that nerve fibre transmission is therefore affected. The abnormality could turn out to be a diagnostic marker for ME/CFS.

• Genetic studies examining HLA characteristics in ME/CFS and a genetic predisposition to ME/CFS

Key references:

Immunology: cytokine status and illness duration www.ncbi.nlm.nih.gov/pubmed/26079000

Neuroimaging: right arcuate fasciculus abnormalityhttp://pubs.rsna.org/doi/abs/10.1148/radiol.14141079

Valganciclovir clinical trials:

Kogelnick 2006:
www.ncbi.nlm.nih.gov/pubmed/17276366

Lerner et al, 2002:
www.ncbi.nlm.nih.gov/pubmed/12582420

Lerner et al: 2004:
www.ncbi.nlm.nih.gov/pubmed/12582420

Montoya et al 2013:
www.ncbi.nlm.nih.gov/pubmed/23959519

In this trial Montoya et al randomized (2:1) 30 ME/CFS patients with elevated IgG antibody titres against HHV-6 and EBV to receive valganciclovir (VGCV) or placebo for 6 months in a double-blind, placebo-controlled trial.

Statistically significant differences between groups were observed in mental fatigue sub-scores and cognitive function.

The VGCV patients experienced improvements within the first three months and maintained that benefit for the remaining 9 months.

In the VGCV arm monocyte counts decreased, neutrophil counts increased, and cytokines were more likely to evolve towards a Th-1 profile.]

Watt et al, 2012
www.ncbi.nlm.nih.gov/pubmed/23080504

Valganciclovir reduces inflammation in HIV:http://hivandhepatitis.com/recent/2011/0426_2011_c.html

All patients treated with valganciclovir had undetectable CMV viral load after 8 weeks of treatment, while 44% of those in the placebo group still had detectable CMV.

In addition, valganciclovir-treated participants had significantly greater reductions in CD8 T-cell activation (defined as CD38+HLA-DR+ marker profile) compared with placebo recipients at weeks 8 and 12 — a reduction of about 20%.

Patients in the valganciclovir arm also had reduced levels of high-sensitivity C-reactive protein (CRP), a blood biomarker of inflammation.]

Virology: Torque viruses:http://jid.oxfordjournals.org/content/early/2014/05/05/infdis.jiu210.full<

YouTube video of opening remarks from Professor Stephen Holgate and presentation from Professor Jose Montoya:

www.youtube.com/watch?v=69Jz43kSQX0

Ends

I don't think I could bear to hear him talk about the treatments he uses, knowing full well in the UK we are denied access to any of them. It breaks my heart, we suffer, whilst others profit from our misery. All those poor souls in darkened rooms, all those poor souls with no hope, contemplating suicide, and the poor, poor children. I think of them every day, they are in my thoughts every time I write on here, those with no voice.
 
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2,158
I wonder whether Crawley and others of her ilk will actually attend all the biomedical sessions, or will they just breeze in for their own presentations?

If Holgate and Crawley really listen to Montoya and Nath, will they have a blinding realisation that all Crawley's previous research should be retracted and present research such as FITNET should be halted?

Will Holgate withdraw his support for Crawley's work?

Will Crawley stop misdiagnosing tired kids as CFS? Will she stop diagnosing kids with severe ME as pervasive refusal syndrome or whatever it's called now?

Will she withdraw from ME/ CFS research acknowledging she's got it wrong?

Will she hand over running of MEGA to the team running the existing UK ME biobank if funding has been granted, or close MEGA down and support the biobank instead?

If none of these thing happen, and following this interesting and informative conference, Crawley and Holgate carry on just as before, then what's the point of so called collaboration?
 
Messages
2,125
He then said that people with ME/CFS had been ignored and humiliated by the very people who were supposed to be helping them – the medical profession. In his own words….“I have a wish and a dream that medical and scientific research societies in the US apologise to their ME/CFS patients
I would like to see one of the UK researchers dare to say anything like this with relation to what has been going on and continues in the UK; and point out that GET and CFS-style CBT are totally inappropriate treatments for ME given the biomedical research findings.
There is no point in talking about ME being a neglected, complex and 'misunderstood' disease while tolerating those who perpetuate the situation.
 

charles shepherd

Senior Member
Messages
2,239
I wonder whether Crawley and others of her ilk will actually attend all the biomedical sessions, or will they just breeze in for their own presentations?

If Holgate and Crawley really listen to Montoya and Nath, will they have a blinding realisation that all Crawley's previous research should be retracted and present research such as FITNET should be halted?

Will Holgate withdraw his support for Crawley's work?

Will Crawley stop misdiagnosing tired kids as CFS? Will she stop diagnosing kids with severe ME as pervasive refusal syndrome or whatever it's called now?

Will she withdraw from ME/ CFS research acknowledging she's got it wrong?

Will she hand over running of MEGA to the team running the existing UK ME biobank if funding has been granted, or close MEGA down and support the biobank instead?

If none of these thing happen, and following this interesting and informative conference, Crawley and Holgate carry on just as before, then what's the point of so called collaboration?


I know that I'm banging my head against a brick wall here - but you have a very distorted and inaccurate impression of what happens at CMRC conferences

They are not crammed full of presentations from psychologists and psychiatrists - their input is almost non existent

The audience is not crammed full with psychiatrists and psychologists - I can only recall meeting two last year in
Newcastle

And people do not disappear for biomedical presentations

If they did, there wouldn't be any point in people (CS included) forking out £400 to attend!

CS
(who is now having a day away from the keyboard for a change)
 
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2,158
I know that I'm banging my head against a brick wall here - but you have a very distorted and inaccurate impression of what happens at CMRC conferences

They are not crammed full of presentations from psychologists and psychiatrists - their unput is almost non existent

The audience is not crammed full with psychiatrists and psychologists - I can only recall meeting two last year in
Newcastle

And people do not disappear for biomedical presentations

If they did, there wouldn't be any point in people (CS included) forking out £400 to attend!

CS
(who is now having a day away from the keyboard for a change)

I don't wish to quarrel with you @charles shepherd . I appreciate all you do for us.

But I have to respond because you have completely misrepresented what I have said.

My comment made no mention of the conference being crammed with psychologists or psychiatrists. In fact the two people I name, Crawley and Holgate, are neither of these things.

Nor did I distort what happens at the conferences - in fact I described it as an 'interesting and informative conference'.

What I did question was whether all the biomedical presentations would change the minds of Crawley and Holgate.

I am pleased to hear that they will be attending all the presentations. I just hope they listen with open minds.
 
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2,125
you have a very distorted and inaccurate impression of what happens at CMRC conferences
I watched all the presentations from last year on Youtube (which only got a few hundred hits at best); I also watched coverage of the IiME conference in London, and the recent OMF symposium.............the last two had several memorable presentations.
All that the 2016 CMRC brings to mind is this:
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
I watched all the presentations from last year on Youtube (which only got a few hundred hits at best); I also watched coverage of the IiME conference in London, and the recent OMF symposium.............the last two had several memorable presentations.
All that the 2016 CMRC brings to mind is this:
I watched a few minutes and couldn't bear to watch any more.
 

Cinders66

Senior Member
Messages
494
I couldn't hear Montoya presentation last year as the streaming didn't work
I do remember holgate either introduced him or followed him and seemed to think uk and the likes of Montoya all on same page when clearly not. I think that it's the uk and CMRC preference for broad CFS umbrella, widest definitions etc that means Holgate sees all approaches valid including CBT /GET valid. Holgate thinks IOM definition was nice as it was broad , I disagree, although it's less specific than CCC.


I'm amazed that the 2011/12 MRC funded researchers are still being dragged up as current.
Whilst the conference has some impressive speakers as well as less great, the key point for me is that since 2011/12 I only know of the mark Edwards 2015 study that's got any funding for ME research from MRC.compared to what NIH are doing , as well as Norway and Australia I don't think it's acceptable so I see the conference as an inadequate response to the ME/CFS crisis from the big players MRC NIHR welcome.
 

dangermouse

Senior Member
Messages
430
If Holgate and Crawley really listen to Montoya and Nath, will they have a blinding realisation

I think this is the crux of the matter (in my humble opinion).

Because those two people are so influential, and (it seems) hold the reins, at the CMRC it would be disappointing if Montoya and Nath's presentations don't get through to them.

It wouldn't make sense that they'd be educated about ME and then just continue with the same as usual.

That EC has continued involvement with ME beggars belief. If she gets funding for and heads MEGA....well, it'll be a sad day. It is wrong on so many levels.
 

Cinders66

Senior Member
Messages
494
I think this is the crux of the matter (in my humble opinion).

Because those two people are so influential, and (it seems) hold the reins, at the CMRC it would be disappointing if Montoya and Nath's presentations don't get through to them.

It wouldn't make sense that they'd be educated about ME and then just continue with the same as usual.

That EC has continued involvement with ME beggars belief. If she gets funding for and heads MEGA....well, it'll be a sad day. It is wrong on so many levels.

Lipkin and Montoya other years didn't change anything. I just hope the MRC feel guilty for not doing even the little NIH do
 
If they're leaving the MEGA announcement until conference I Expect it's to deliver good news. The 2015 conference and 2016 conference featured positive announcements on it as the good news for long suffering patients and to be the "something happening"
Good news being Crawley, Holgate and anybody else BPS inclined has decided to leave research altogether?? ;)
 
Messages
13,774
I know that I'm banging my head against a brick wall here - but you have a very distorted and inaccurate impression of what happens at CMRC conferences

They are not crammed full of presentations from psychologists and psychiatrists - their unput is almost non existent

The audience is not crammed full with psychiatrists and psychologists - I can only recall meeting two last year in
Newcastle

And people do not disappear for biomedical presentations

If they did, there wouldn't be any point in people (CS included) forking out £400 to attend!

CS
(who is now having a day away from the keyboard for a change)

Trish already explained that you're complaining about points she did not make, but I just want to go one further, and explain that concerns about the CMRC is not really about the conference, which seems little more than a fig-leaf over the CMRC's on-going promotion of Esther Crawley. It doesn't really matter what show is put on at the conference. What matters is where research funding is directed. We saw Holgate claiming that Crawley's FITNET-NHS is exactly the sort of research we need. That matters more than Nath giving a 40 minute talk to some students who can see where the money and power lies if they want to make a career in UK research for CFS.

The UK medical establishment, CMRC, NICE, etc are great at providing superficial signs of progress and respect for patients. But when it comes down to it, on the issues that matter, they show themselves to be bigots and quacks. Despite all that has happened with PACE, with Matthee's amazing victory at the tribunal, with Tuller and US academics speaking out, their only response has been to put their head in the sand and pretend that the problems stem from unreasonable patients.

When it first started, I was deluded enough to mistake the superficial signs of progress from the CMRC as something more than they were, and hoped it would be a start of something really positive for patients. Lookng back on it, how can anyone now see it as anything other than a con intended to entrench Crawley and the biopsychosocial approach (while reassuring stupid dualist patients that it was a 'biomedical' illness, whatever that means)?

I'm sure that the patient groups involved went in with the best of intentions, and expecting it would turn out better than it has, but I'm worried that they might now be trapped in some sunk-cost fallacy. As if by giving just a bit more support to the CMRC, they might turn it around and have become something positive? So much time and effort has already invested into it that the idea of turning away becomes emotionally painful, even though it's now clear that this is the right thing to do.

Is there anything that the CMRC could do that would now lead to the MEA leaving, or do Crawley and Holgate know that they can get away with anything? With Crawley, we've had her clearly misrepresenting treatment efficacy (claiming PACE showed a recovery rate of 30-40% for CBT and GET); smearing critics, including Tuller and many patients, as anti-science and libellous; directing limited research funding to indefensible junk science like SMILE... how much worse could she show hereself to be before it was time to walk away?
 
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2,125
I watched a few minutes and couldn't bear to watch any more.
I would suggest watching from around 24.45 which is when the audience are allowed to ask 2 questions and how EC dismisses any concerns about exercise also briefly talks about protocols in MAGENTA.
After she goes off. The next speaker talks briefly about the severely affected........

eta: In case anyone didn't know, EC is the Deputy Chair of the CMRC, and of course MERUK won't be there this year because they left the CMRC this year.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
The CMRC will never be accepted by aware patients while people who produce poor research and behave badly toward patients are involved and are strongly supported and promoted by the CMRC.

Whilst there are a small number of decent people involved (such as Charles), there is just too much rot at the core of the CMRC and it primarily seems to be a vehicle for achieving funding for more poor research (whether that is poor biological or poor psychological research is really irrelevant).