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

Valentijn

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I agree with @Wildcat

Some psychologists hold the demonstrably incorrect view that ME/CFS is a psychosomatic disorder. But that belief should not be automatically entitled to respect or an equitable amount of recognition and power. And it's rather pathetic that they are demanding and receiving any power over anything involving this disease, such as in the form of the CMRC.

There is no way to rationally argue that they might still be right at this point. They are wrong, and by sticking to their disproven theories they have obtained the status of fringe quacks. They should not be on the CMRC, or in other position of authority, until they realign their beliefs to accord with the overwhelming reality of the disease.
 
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Seanko

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I do agree with your sentiments but as you know I am still supportive of the CMRC. I don't think it will be long before they are well and truly marginalised. In fact, I think I'll predict a year! 2018.
Glad you support the CMRC. It is a good initiative with lots of good people involved.

Sometimes you have to deal with people whose views you may not agree with.

I understand that Jonathan Edwards was amongst those to attend last year.
 

Scarecrow

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Sometimes you have to deal with people whose views you may not agree with.
I agree but bear in mind that many people with ME have been harmed in far more than a casual sense by BPS proponents. Imagine having to work with someone who has assaulted you.
I understand that Jonathan Edwards was amongst those to attend last year.
See here......we'll put that one done to brainfog / memory problems!!!
 

Seanko

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@Scarecrow lol. I did see your Jonathan Edwards passage but fogot about it. Was having a chat with somebody online about the CMRC today, hence the post earlier.

I registered for the event today and will go health permitting. Hopefully be a good chance to meet various people I've chatted to online.

PS you will have realised I ask a lot of hypothetical questions many of which I don't have an answer to. :)
 

Seanko

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@Scarecrow I've been living with ME/CFS for 34 years, most of the time undiagnosed.

GPs have tried to say I was depressed and I argued with one for 30 minutes to get a sick note with ME/CFS on it rather than depression.

I know all about the frustration of relapses and wondering if I will ever improve.

That is why I am encouraged about the CMRC event & the Rituximab trials in Norway and UCL.
 
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Seanko

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@Wildcat the composition of the CMRC maybe is not ideal. it has changed. Peter White has left.

You may remember that Mady Hornig started off her research career as a "psychiatrist" yet this has not stopped her doing ground breaking research with a multi-disciplinary team at Columbia University.

Jarred Younger is nominally a psychologist but doing very interesting work at the University of Alabama.

The old medical specialities are becoming less meaningful as the best research teams have a wide range of talents.
 

Scarecrow

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@Scarecrow I've been living with ME/CFS for 34 years, most of the time undiagnosed.
A similar length of time as me, so at least we're both old enough and ugly enough not to have been offered GET with outrageous promises when were too naïve to know better. ;) Unfortuantely, I managed to do it to myself without any 'expert' assistance but that's another matter.
 
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Scarecrow

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Peter White has left.
And it's debatable whether Carmine Pariente is an improvement. We'll see.
You may remember that Mady Hornig started off her research career as a "psychiatrist" yet this has not stopped her doing ground breaking research with a multi-disciplinary team at Columbia University.

Jarred Younger is nominally a psychologist but doing very interesting work at the University of Alabama.
I don't think you need to point this out to Wildcat. I expect he is well aware.

Nobody is saying psychiatrists and psychologists are 'bad'. It's the behaviourists you want to make sure are kept away from ME/CFS. I'm all for psychiatrists taking an interest. My most crippling symptoms from ME (provided my OI problems aren't playing up) involve cognitive impairment. I want brain altering substances and I want them now!
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
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@Wildcat the composition of the CMRC maybe is not ideal. it has changed. Peter White has left.

You may remember that Mady Hornig started off her research career as a "psychiatrist" yet this has not stopped her doing ground breaking research with a multi-disciplinary team at Columbia University.

Jarred Younger is nominally a psychologist but doing very interesting work at the University of Alabama.

The old medical specialities are becoming less meaningful as the best research teams have a wide range of talents.
I don't see anyone on this thread disparaging every psychiatrist or psychologist in the world.

The issue that is being expressed is with specific members of CMRC who are either incapable or unwilling to carry out unbiased research. or to present their findings in an honest manner. or seemingly to even acknowledge that the whole body of biomedical research findings in ME exists. Its not a position that many feel is likely to produce any useful results, but is very likely to spread more harmful nonsense.
 

Valentijn

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You may remember that Mady Hornig started off her research career as a "psychiatrist" yet this has not stopped her doing ground breaking research with a multi-disciplinary team at Columbia University.

Jarred Younger is nominally a psychologist but doing very interesting work at the University of Alabama.
You are engaging in a logical fallacy by suggesting that our objection is due to the specialization of those involved. It is not. Our objection is due to their unwavering belief in a psychosomatic causation of ME/CFS. Most psychologists do not support their beliefs, and a few doctors specializing in purely biomedical do share their beliefs.
 

Seanko

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@Scarecrow it sounds like we have a lot n common.

You know the UK research scene better than me. Are there any good scientists who you would like involved on the relevant CMRC & MRC committees?
 
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I think it's a reflection of how expectations have been repeatedly slashed in the UK that people quite happily look to 2018 as a turning point for things to start to really get better. Being very severe I don't have the luxury of watching years pass by semi-content.

Regarding the CMRC, I remember from the minutes of a forward for ME meeting the Countess of Mar saying that the point of the CMRC was to increase research applications & asking therefore had it? The answer I think was I don't know or don't think so, we certainly haven't had anything significant in terms of funds announced but that might not be just bad luck & disinterest. I don't expect anymore significant funding from MRC/NIHR until " this round" of projects has all been completed which means we will be averaging at £400,000/year or £2/patient. That will be the equivalent of 1 research project funded a year for an illness recognised as being serious & disabling to the potential end point of complete incapacitation.

The elephant in the room to me is that in the UK CFS as it is , talked of & defined isn't taken seriously so until we have a different name & frame the illness differently/& or entice researchers in with ring fenced money (something MRC won't do) I don't see researchers queuing up to research this illness which will be a convenient get out of funding excuse. I don't see how 1 conference a year is supposed to revolutionise things but I don't see the multi-faceted approach to bring about the change required across health & medical orgs. Holgate insists on a broad church approach to CFS , & in UK PEM is marginalised, why can't we at least have decent M.E criteria, not just Fukuda or worse, promoted so we can move away from the prevalent UK MUS/MUF talk & the unhelpful lumping of CFS & IBS as if they're comparable illness.

The IOM report , criteria & fresh name could have been used as a way to manoeuvre out of this mess but was rejected in favour of status quo. Sad.

I think we should all in the UK, as is happening in the states, consider what should be happening for such a neglected illness & just lobby for it without being fobbed off or because lives are going down the drain as years pass.
 
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It should be remembered Drs Fluge & Montoya are world class researchers...should we dismiss their contributions.

Obtaining the support of the Medical Research Council (MRC) is the key to obtaining proper funding for ME/CFS research in the UK.

@Wildcat How would you persuade the MRC to fund proper large scale research?
@Seanko by stopping pretending the MRC are treating us so well & fairly as AFME & MEA do in the magazines/on their sites & start lobbying them for decent funding/ getting media attention for it etc instead of accepting crumbs.

In the usa advoccy groups aren't devoting ttime to promtoting the NIH and celebrating the piddling $5m they grant but pushing for parity with other severe illness, askng for special measures to overcome the inherent difficulties in getting me/cfs research going & making it clear to to media & through lobbying that current status quo is not acceptable. We have none of that in uk.
 
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shahida

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@Wildcat the composition of the CMRC maybe is not ideal. it has changed. Peter White has left.

You may remember that Mady Hornig started off her research career as a "psychiatrist" yet this has not stopped her doing ground breaking research with a multi-disciplinary team at Columbia University.

Jarred Younger is nominally a psychologist but doing very interesting work at the University of Alabama.

The old medical specialities are becoming less meaningful as the best research teams have a wide range of talents.
But there seems to be a divide within psychiatry as to what it means or there are fudge areas- eg. dementia is regarded as a psychiatric issue. Hornig still calls herself one but to her it means any disease involving the brain unlike the \wesseley types who are behavourists.
 

Sasha

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#MEAction are looking for people to take notes:

http://www.meaction.net/2015/10/11/uk-cmrc-conference-on-october-13-and-14/

MEAction said:
If any of our readers are able to take notes during the event we would love if you could share them with us at info@meaction.net.
Last year, Sonia Chowdhury of AfME tweeted. I hope she'll do it again and that others might also be able to get word out about stuff, as long as it's not embargoed. Those embargoes are there for a reason and are in all of our interests, of course.

I'm looking forward to the livestreaming.

Does anyone know if AfME will post the livestreamed material on YouTube later?
 

eafw

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I know the livestream has has been mentioned, but you don't have to be a CMRC member or register to view it. The link to the livestream itself is in the article below

We’ll be broadcasting Plenary Session 2: Widening the Net, which runs from 4.30pm to 6.30pm on Tuesday and includes presentations from Dr Esther Crawley, Prof Fai Ng, Prof Carmine Pariante, Prof Anne McArdle, and Prof Julia Newton. We’ll also be livestreaming Prof Jo Nijs’ presentation on Wednesday, which runs from 9am to 9.45am, along with Prof Jim Horne’s presentation from 1.45pm to 2.30pm.

http://www.actionforme.org.uk/get-informed/news/our-news/action-for-me-to-livestream-cmrc-conference
 
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UK CFS/M.E. Research Collaborative science conference on USTREAM:
not live yet, but will be tomorrow

Tuesday's livestreams (UK time, GMT+1)
10:30 Stephen Holgate's opening address

16.30 Health & Social Policy Research and M.E. Prof Liz Perkins, Liverpool University

17:15 onwards Medical Research Council Funded Project Updates:

  • Investigating the epidemiology of CFS/ME in children using the ALSPAC cohort (not this one apparently as raw data being shown) Dr Esther Crawley, Bristol
  • Identifying the biological fingerprints of fatigue Prof Fai Ng, Newcastle
  • Persistent fatigue induced by Interferon-alpha: a new immunological model for chronic fatigue syndrome, Prof Carmine Pariente, King's College London
  • Determination of mitochondrial function & cytokine production in skeletal muscle of patients with CFS, Prof Anne McArdle, Liverpool
  • Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment, Prof Julia Newton, Newcastle
  • Plenary Q&A
(there will be more livestreaming on Weds)

Rest of Tuesday's agenda
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Plenary Session 1: Neuropathology
Chair: Prof Hugh Perry, Southampton University

10.45 Keynote Presentation: Prof José Montoya

Stanford ME/CFS Collaboration: Collaboration, Innovation & Discovery, Stanford University

11.45 Neural correlates of fatigue: a voxel-based morphometric MRI study of chronic fatigue syndrome (CFS/ME)
Whitney General, Bristol University

12.00 Brain white matter hyperintensities are not a common finding in chronic fatigue syndrome
Andreas Finkelmeyer, Newcastle University

12.15 Plenary Q&A
-------------------------------------------------------

Tuesday afternoon Workshops:​

For Researchers and Associate Members:

Workshop 1 – Patient reported outcome measures

Dr Kirstie Hayward, Warwick University

Workshop 2 – Fatigue Matters
Prof Julia Newton, Newcastle University; Chris MacDonald, Arthritis Research UK


For Researchers only
:

Workshop 3 - Autonomic Nervous System
Dr James Frith
Newcastle University

Workshop 4 - Neuropathology
Prof Hugh Perry

Southampton University

Workshop 5 – Clinical Trials
Dr Esther Crawley

Bristol University