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

Bob

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"Grand Challenge", "Big Data", and "Large Cohort" means years of pre-study organizing, conferences, meetings, grant applications, etc.

It also means many more years of suffering and dead patients.
If the alternative is pointless rounds of small scale studies that give no conclusive answers to anything, then I'll go with the large scale big data trial. I agree we need treatments now, but we also need strategic planning.
 

jimells

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If the alternative is pointless rounds of small scale studies that give no conclusive answers to anything, then I'll go with the large scale big data trial. I agree we need treatments now, but we also need strategic planning.
Professor Edwards managed to achieve significant breakthroughs without "Big Data" and "Grand Challenges", so perhaps there are more than two options?
 
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@charles shepherd , did Colin Barton ever get back to you to explain exactly why and how the NICE and BACME-supporting Sussex CFS Society is assisting with Dr Mark Edwards MRC funded research?

‘This project that is being funded by the Medical Research Council will involve three scientists - Dr Mark Edwards, a neurologist at the Motor Neurosciences Unit, UCL Institute of Neurology, Prof Neil Harrison from the University of Sussex and Dr James Kilner at University College London.’

The Sussex CFS Society Charman, Colin Barton writes on the site: , “We are delighted to be able to assist with this most important study.”

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@charles shepherd , did Colin Barton ever get back to you to explain exactly why and how the NICE and BACME-supporting Sussex CFS Society is assisting with Dr Mark Edwards MRC funded research?

‘This project that is being funded by the Medical Research Council will involve three scientists - Dr Mark Edwards, a neurologist at the Motor Neurosciences Unit, UCL Institute of Neurology, Prof Neil Harrison from the University of Sussex and Dr James Kilner at University College London.’

The Sussex CFS Society Charman, Colin Barton writes on the site: , “We are delighted to be able to assist with this most important study.”

.

No - I never received a reply from Colin. My query followed his comment about this on the MEA Facebook Page
 
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Yes, I saw your question to Colin. I do think that he should answer the question, and explain how the Sussex Society is assisting the research. They should be accountable to the ME community about their involvement with CMRC research Someone will have to write to Colin about it I expect.
 
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Dr Mark Edwards (Senior Lecturer at the Sobell Department of Motor Neuroscience and Movement Disorders at the UCL Institute of Neurology and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery)

Professor Jonathan Edwards attends the conference when he can but is not a member of the Board of the UK Research Collaborative
 
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Full list of Research Collaborative Board Members:

Dr Neil Abbott (MERUK)

Sonya Chowdhury (AfME)

Dr Esther Crawley (Reader in Child Health, Bristol University)

Dr Mark Edwards (Senior Lecturer at the Sobell Department of Motor Neuroscience and Movement Disorders at the UCL Institute of Neurology and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery)

Dr Zoe Gotts (post-doctoral health researcher: sleep research, University of Northumbria)

Professor Stephen Holgate (Immunopharmacology, University of Southampton)

Professor Peter Little (Primary Care Research - University of Southampton)

Dr Alastair Miller (Infectious diseases, University of Liverpool)

Professor Julia Newton (Dean of Clinical Medicine, Newcastle University)

Professr Carmine Pariante (Profesor of Biological Psychiatry, KIngs College Hospital)

Professor Hugh Perry (Experimental Neuropathology, University of Southampton and Chair of Neurosciences Board at MRC)

Professor Chris Ponting (Professor of Genomics, University of Oxford)CV: http://www.dpag.ox.ac.uk/research/ponting-group

Dr Charles Shepherd (MEA + other appointments)

Mary Jane Willows (AYME)
 

Research 1st

Severe ME, POTS & MCAS.
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@charles shepherd , did Colin Barton ever get back to you to explain exactly why and how the NICE and BACME-supporting Sussex CFS Society is assisting with Dr Mark Edwards MRC funded research?

‘This project that is being funded by the Medical Research Council will involve three scientists - Dr Mark Edwards, a neurologist at the Motor Neurosciences Unit, UCL Institute of Neurology, Prof Neil Harrison from the University of Sussex and Dr James Kilner at University College London.’

The Sussex CFS Society Charman, Colin Barton writes on the site: , “We are delighted to be able to assist with this most important study.”

.
Wildcat, here are some Colin Barton quotes that don't appear to mirror the experiences of UK ME sufferers on this forum (or from any other country), but do appear to mirror UK BPS psych CFS, which AFME support.

Colin Barton:
''Most doctors do now accept that ME/CFS is a genuine and disabling illness and do their best to treat and support their patients.''

Source:http://www.theguardian.com/news/2002/apr/21/letters.theobserver
I found that odd, as there is no evidence based treatment for ME/CFS, especially in the UK that is using CBT/GET. In addition, patients report that most doctors in the UK do NOT accept that ME/CFS is a genuine disabling illness, and indeed, want nothing to do with the patients and leave them to rot in their homes and beds (as there is no treatment, and their symptoms are presumed psychosomatic). There are exceptions of course.


Colin Barton:
One interesting development that we have noticed in our area is that many more people with M.E./CFS these days are falling into the mild to moderate category and improving significantly with the help of various approaches.


Source:http://www.actionforme.org.uk/get-i...-recovery/can-and-do-people-recover-part-two/

This again seems odd. I don't know if there is any evidence that ME/CFS 'these days' only makes people mild or moderately affected with ME/CFS?

Again he mentions the 'approaches', but doesn't list them.

The approaches available to UK doctors are anti depressants, counselling, pacing, CBT and GET. (TILT test and Antivirals are advised against in the NICE guidelines). So no other 'approaches' are possible, as no research has lead to an evidenced based therapy yet. Unless you tow the BPS psych CFS line that is.

Of note the IOM don't feel these approaches work either as as a form of treatment for CFS ME rebranded as SEID.

So a strangely positive outlook, but with no mention what this effective treatment programme for ME CFS is.. that science itself also isn't aware of.
 
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Research 1st

Severe ME, POTS & MCAS.
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Dr Alastair Miller quoted on AFME website in 2010, who at the time, was AFME's 'principal medical advisor'.

The question is:
Can & Do people recover?

Dr Millers response, is below:

The short answer is absolutely yes, and several anecdotal case histories are firmly in mind as I respond to this question. I recall a senior military officer who returned to duty and achieved further promotion; an Olympic oarsman who returned to top class rowing; a woman who, 18 months after being bed bound, trekked to Everest base camp; and a sales representative who, having been off sick for more than 12 months returned to full time sport and became “rep of the year” within her organisation.

So, yes, it can happen and many other people with M.E. have achieved similar if less dramatic recoveries. Early diagnosis and intervention are important and those who have been severely affected for many years have less chance of achieving full recovery, but may still do so.

Certainly having a sympathetic and supportive clinical team, a flexible employment situation and a supportive domestic environment are big contributors to a full recovery.

One of the most important advances in the next few years will be the so called “phenotying” of the condition - that is, classifying it perhaps into several different conditions, and we may then see that different classes of the condition have different outlooks for recovery.

But for now, the answer is yes, you can make a full recovery. My advice is to get diagnosed as soon as possible and enter into an appropriate therapeutic relationship with a supportive clinical team

Source: http://www.actionforme.org.uk/get-i...-recovery/can-and-do-people-recover-part-two/

This confuses me greatly. It looks like he's describing F48.0 psych CFS, not organic ME CFS? Hence he was medical advisor to AFME (who supported the PACE trial) and not the 25% ME group.

I prefer Dr Shepherd's response who says from the same source as above, a rather more accurate comment.

Dr Shepherd:
''So my advice to people who ask this question is to be both realistic and optimistic. The chances are that some degree of recovery will almost certainly occur, although full recovery may not be possible.
Now that's a realistic reply when it comes to ME. So it seems Dr Miller is referring to MRC F48.0 Psych CFS which is then incorrectly referred to as 'ME'.

Hopefully Dr Alistair Miller now in the UK Research Collaborative, as it has 'gone biomedical' has changed his views. At the end of the day, 'employment status/domestic environment' have no effect on the disease process, to allow for a
full recovery.

I'd say B Cell depletion in an autoimmune subset, and/or wiping out pathogens, is far more likely to lower chronic inflammation, reduce symptoms, and increase the human bodies ability to recover.
 
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@Research 1st .... I just wrote a post in response to yours but lost it.

In short the attitude of the Sussex Society Chairman reflects those of UK BPS psyches and BACME, but don't reflect the experiences of UK patients, including those in Sussex. Raises the question of how objective future reporting by the Sussex Society of the MRC funded Mark Edwards research would be.

I have stated in a previous post that the Sussex CFS Society is a top down organisation, it wields a lot of power in Sussex with its contact with the Brighton and Sussex University Hospital; its friendly relations with the Brighton Argus local paper and local orgs. But the Sussex Society is determindly supportive of NICE, the UK Clinics, and BACME.

Sussex patients who report to the Society about bad attitudes or behaviour from GPs or other doctors and health professionals in Sussex, are not listened to, and are airbrushed out of the pretty pictures that Colin Barton paints.

The Sussex Society has strong links with Barts and Peter White.

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Colin Barton:
"One interesting development that we have noticed in our area is that many more people with M.E./CFS these days are falling into the mild to moderate category and improving significantly with the help of various approaches."
Source:http://www.actionforme.org.uk/get-i...-recovery/can-and-do-people-recover-part-two/


Sussex Society marketing sales talk for the UK Clinics, NICE and BACME.

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halcyon

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"One interesting development that we have noticed in our area is that many more people with M.E./CFS these days are falling into the mild to moderate category and improving significantly with the help of various approaches."
That or many more people are being misdiagnosed with CFS and go on to improve because they don't actually have the disease which is by definition chronic.
 
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The whole "you might recover" thing reflects that a minority (5-10%) do end up recovering spontaneously (though as we know on the forum, some of those people become ill again years later).

I think they say this to try and give people hope.

You know how it is, you have severe symptoms, you've been given a dead-end diagnosis, told their are no treatments and they say, hey keep your chin up, I know a guy who knows a guy who recovered!
 
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The Sussex CFS Society maintain a blind optimism as part of its policy of being officially pro-NICE, pro-CFS Clinics, and as a member of BACME the Sussex Society supports BACME Guidelines.

I have stated in earlier posts the Society's choice of Medical Advisors, and its long term affiliation with Barts CFS Clinic and Peter White. It is not just a case of a local ME group trying to give its members hope.
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All but three UK ME charities and groups who made submissions to NICE, condemned the NICE Guidelines as 'Unfit for Purpose'. The only exceptions were AFME, AYME and the Sussex CFS Society (a local group and charity), who all support NICE.

Two of the Sussex officials were patient representatives on the Chief Medical Officers Working Group. The Sussex Society were very active in national campaigning on many issues, maintaining a stance of supporting the medical establishment's handling of ME. That leaves ME sufferers in Sussex (and Kent) marginalised by their own (supposed) local ME Group.
 
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MeSci

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I see Mark Edwards has a new article in the Lancet Neurology, Title "Cranial functional (psychogenic) movement disorders". I don't see much room for doubt about his beliefs on so called functional disorders there. http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(15)00226-4/abstract?elsca1=etoc&elsca2=email&elsca3=1474-4422_201512_14_12_&elsca4=Neuropsychiatry|Internal/Family Medicine|Neurology|Lancet
and look who's there - our 'friend' Jon Stone.
 
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The CMRC is losing credibility for its flagship 'biomedical ME research' by the minute. Are ME patients supposed to be reassured that the CMRC is really taking ME biomedical research seriously? Peter White has left the Collaborative but 'functional' researchers with hardcore BPS research connections, such as Mark Edwards history with Jon Stone, are still being given money by the MRC. And the patients are supposed to be reassured by it?
 
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