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UK Dr recommendations?

Discussion in 'ME/CFS Doctors' started by Esther12, Mar 15, 2010.

  1. ukxmrv

    ukxmrv Senior Member

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    The situation with Neurologists is utterly abysmal Pollycbr125.

    Have you tried ringing some of the local ME group leaders in areas you can visit? The MEA has a list on their website. Usually the group contacts know very well who is good in their area and who to avoid.

    If you see any consultant for ME or CFS and you have not vetted them before-hand you run the risk of being labeled mentally ill and having that on your records or having your time/energy wasted. There are always pleasant surprises of course.

    I'd not had one with a Neurologist but there are sure to be some good ones somewhere.

    If you write to Dr Chaudhuri he may even suggest one?
     
  2. pollycbr125

    pollycbr125 Senior Member

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    my local ME group is 20 miles away as im pretty much housebound i havent really bothered with them . at the mo a 40 mile round trip is out of the question . i live in a village and thus get no help or support whatsoever . it really is a joke .

    i was supposedly reffered to social services sept of last year no one has been near ive requested again .im a single mum its not fair on my kids .you really are invisible with this illness . if i hadnt begun searching on the internet i would still have been oblivious to the full extent of this illness .

    writing to dr chaudhuri is a good idea actually i think i will just do that thanks
     
  3. Uno

    Uno Senior Member

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    Hey Polly

    Give Chaudhuri a go by all means but don't get your hopes up. Don't mean to put people off and be all negative but a few friends of mine went to see him and all he offered was CBT and antidepressants. He runs his clinic by the NICE Guidelines and a recent patient came away feeling really downtrodden. But he might help you. There is a guy up North in Co Durham his name is Dr Irving Stubbs, he is an expert in Entoviruses and M .E. PM me and I'll give you his contact details. This guy is private. I don't think there is one consultant in the Uk on the National Health Service that prescribes anything other than Omega 3, Pacing, Cognative Behaviour Therapy and Anti Depressants as they are duty bound by the NICE Guidelines. I am currently doing a survey on NHS treatments for M.E vs Private doctors and protocols amongst other things and run a database of recommended consultants for M.E.

    There is also an infectious diseases consultant in Liverpool who works with M.E patients - his name is Dr Alastair Miller and he does a lot of stuff with the 25% M.E Group.

    Take care x
     
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    What does he do with the 25% ME Group?

    http://readmeukevents.wordpress.com...r-alastair-miller-speaker-rsm-cfs-conference/

    Correspondence with Dr Alastair Miller, speaker, RSM CFS Conference

    [...]

    Turning to the conference itself – I think it is excellent news that a distinguished body such as the Royal Society of Medicine (RSM) should put on such a conference. Clearly there are a number of speakers from a mental health background but equally there are speakers and chairs from general practice, hospital medicine, rehabilitation and from patient groups so I would not regard the coverage as being “unbalanced” and I think it would be a great shame if patients’ views went unheard at the conference. I am thoroughly looking forward to participating and was delighted to be invited.

    [...]
     
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Dr Alistair Miller was a presenter at the Royal Society of Medicine “Chronic Fatigue Syndrome” Conference on 28 April 2008:

    RSM Conference Resources

    http://www.rsm.ac.uk/chronicfatigue08/index.php

    Download Abstracts and Biographies [PDF 86k]
    http://www.rsm.ac.uk/chronicfatigue08/abs.pdf

    PowerPoint Slides:

    What drugs can I use? [PDF 243k]
    Dr Alastair Miller, Royal Liverpool University Hospital
    http://www.rsm.ac.uk/chronicfatigue08/miller.pdf

    Webcast of Presentation

    What drugs can I use? Dr Alastair Miller
    http://rsm.mediaondemand.net/player.aspx?EventID=1337
     
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    http://readmeukevents.wordpress.com/2008/03/23/rsm-cfs-conference-programme/

    RSM CFS April 2008 Conference programme

    Planning Committee: Dr John Scadding (Chair), Miss Bina Arpino, Professor Peter White, Professor Simon Wessley, Professor Kam Bhui, Professor Matthew Hotopf.

    Ed: Ms Bina Arpino is a member of the RSM events admin staff, the others are all presenters at the conference or session chairs.

    RSM CFS Conference programme

    Chronic Fatigue Syndrome
    Monday 28 April 2008

    Venue:
    The Royal Society of Medicine,
    1 Wimpole Street
    London,
    W1G 0AE

    Chronic Fatigue Syndrome
    Monday 28 April 2008


    Aims and Objectives:

    Chronic fatigue syndrome is a common and debilitating illness which can persist for years. Despite extensive research, the nature and pathogenesis of the condition remain enigmatic. There is continuing uncertainty and controversy concerning the physical and psychological components that may contribute to the initiation and perpetuation of the symptoms of chronic fatigue syndrome.

    The guidelines published by NICE in August 2007 have met with a mixed response, but many have welcomed the development of evidence based advice about different treatment options.

    The aim of this meeting is to take a broad look at chronic fatigue syndrome, examining its nature and definition, pathophysiology, epidemiology, clinical assessment and diagnosis, the patient perspective, and various approaches to treatment. This is a scientific conference and there will be an emphasis on an evidence based approach throughout.

    Those attending the meeting will gain understanding of the various aspects of CFS being discussed, and be better able to help people suffering from this disabling condition.

    The conference is intended for all health professionals who are involved in the assessment and treatment of those with CFS.

    Planning Committee:
    Dr John Scadding (Chair), Miss Bina Arpino, Professor Peter White, Professor Simon Wessley, Professor Kam Bhui, Professor Matthew Hotopf.

    List of Contributors:

    Dr John Scadding Dean, Royal Society of Medicine
    Professor Peter White Barts & the London Queen Marys School of Medicine and Dentistry
    Dr Anthony Cleare Institue of Psychiatry, London
    Professor Simon Wessely Kings College London
    Professor Anthony Pinching Peninsula Medical School
    Professor Chris Dowrick Liverpool
    Professor Matthew Hotopf Institute of Psychiatry, London
    Professor Mansel Aylward Unum Centre for Psychosocial and Disability Research, Cardiff University
    Sir Peter Spencer Action for M.E.
    Professor Richard Baker Leicester University
    Professor Kam Bhui Department of Psychiatry, Queen Mary School of Medicine and Dentistry
    Professor Rona Moss-Morris University of Southampton
    Dr Alastair Miller Royal Liverpool University Hospital

    Accreditation:
    5 CPD points (Applied for)

    9.25 am Registration and Coffee

    9.50 am Welcome address
    Dr John Scadding
    Dean, Royal Society of Medicine

    SESSION ONE
    Chair: Dr John Scadding
    Dean, Royal Society of Medicine

    9.55 am What is Chronic Fatigue Syndrome and what is ME?
    Professor Peter White
    Barts & the London, Queen Marys Schoolof Medicine and Dentistry

    10.20 am Questions

    10.25 am Pathophysiology
    Dr Anthony Cleare
    Institue of Psychiatry, London

    10.50 am Questions

    10.55 am Epidemiology
    Professor Simon Wessely
    Kings College London

    11.20 am Questions

    11.25 am Open discussion

    11.40 am Coffee

    SESSION TWO
    Chair: Professor Anthony Pinching
    Peninsula Medical School

    12.05 pm Assessment: general practitioners approach
    Professor Chris Dowrick
    University of Liverpool

    12.30 pm Questions

    12.35 pm Assessment: psychiatrists approach
    Professor Matthew Hotopf
    Institute of Psychiatry, London

    1.00 pm Questions

    1.05 pm Lunch

    SESSION THREE
    Chair: Professor Mansel Aylward CB
    Director, Unum Centre for Psychosocial and Disability Research, Cardiff University

    2.00 pm M.E. The patient persepective
    Sir Peter Spencer
    Action for M.E.

    2.25 pm Questions

    2.30 pm Management: NICE Guidelines
    Professor Richard Baker
    Leicester University

    2.55 pm Questions

    3.00 pm Tea

    SESSION FOUR:
    Chair: Professor Kam Bhui
    Department of Psychiatry, Queen Mary School of Medicine and Dentistry

    3.30 pm CBT and GET
    Professor Rona Moss-Morris
    University of Southampton

    3.55 pm Questions

    4.05 pm What drugs can I use?
    Dr Alastair Miller Royal
    Liverpool University Hospital

    4.30 pm Questions

    4.35 pm Open discussion

    5.00 pm Close of meeting
     
  7. Uno

    Uno Senior Member

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    He was recommended by the 25% group as being "a knowledgable and active specalist" to a lady who I spoke to last month.

    I never spoke to the 25% group to clarify his involvement with them on this...I just took what I was told from said sufferer.

    She then stated that he was really kind, understanding and ran lots of tests, changed her pain meds and gave her something to help her sleep.

    So I guess it's being caught between the devil and the deep blue sea - I mean where really is there to go - we don't have Petersons, Cheney's, Kilmas's in the UK.

    If Miller indeed supports Wessely's train of thought as per the Royal Society of Medicine conference yet has he been recommended via my survey - interesting.

    Chaudhuri was recommended to me by Professor Hooper as was Dr Wier but not by dozens of patients who have sent me indepth reasons as to why not to see him.

    I am basically trying to collate information via a survey of the effectiveness of NHS Clinics and the consultants M.E Patients are referred to vs the private system in a bid to find out where, really, is there to go?

    Is every single NHS Consultant going to churn out the same out garbage or is there one willing to do those extra tests and not take the NICE Guidelines word for word?

    Despite all the NICE style treatment offered by Chaudhuri in Romford, I spoke to a lady who saw him privately in Scotland and interestingly did a lot for this lady and her son, both sufferers. He ran muscle biopsies, took tissue samples, did SPECT scans and then referred her son to another specalist as he picked up on a disorder that no other doctors had discovered.
     
    golden likes this.
  8. Angela Kennedy

    Angela Kennedy *****

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    Essex, UK
    I was told, a few months ago, by phone, by the Oldchurch Chronic Fatigue Unit that he doesn't see 'CFS' patients per se because he is in the neurology department at Oldchurch.
     
  9. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    So this was not a recommendation by a member of the 25% ME Group Management Committee but a recommendation from a member of the 25% ME Group who was manning a member support or contact line?

    It's just that the way you had written what you had written sounded as though it might be a recommendation by the Commitee of Management and I have not been aware of any mention by the 25% ME Group in the past of any working association with Alistair Miller, for example, as a Medical Adviser. Their Medical Advisers are Drs Nigel Speight and Byron Hyde.

    We recently had a situation reported in one of the LP threads that a volunteer manning the helpline for The Young ME Sufferers Trust had promoted LP to a caller even though the caller was told that The Young ME Sufferers Trust does not promote LP - which is worrying.

    So I think it is important to distinguish whether recommendations are coming from an organisation's Board of Trustees, or in the case of the 25% ME Group, its Management Committee, or are personal recommendations from volunteers manning contact lines or helplines or doing support via email.
     
    golden likes this.
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    http://www.cfstheresistance.com/my-press-article.php

    The Psychiatrists are even trying to block M.E Help Groups. Association For Young People With M.E (AYME) have part funded Professor of Psychiatry Peter White's ongoing PACE trials.



    On what evidence do you base this statement?

    There is no funding attributed to AYME in the PACE Trial Protocol.
     
  11. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Funding sources for the PACE Trial:


    http://www.rae.ac.uk/submissions/ra5a.aspx?id=9&type=uoa&subid=1724

    PACE trial

    MRC 04-09 2,076,363
    DH Central Subvention 04-09 1,800,600;
    MRC PACE trial extension 09-10 702,975
    DWP: Tbc (See: Cumulative list of unanswered Questions for Written Answer)
    Chief Scientist Office (CSO): 250,000

    source:

    From 2005:

    SCOTTISH PARLIAMENT - WRITTEN ANSWER

    The Chief Scientist Office (CSO), within the Scottish Executive Health
    Department, has responsibility for encouraging and supporting research into
    health and health care needs in Scotland. CSO is currently contributing
    250,000 to the Medical Research Council project 'Pacing, Activity and
    Cognitive behaviour therapy: a randomised Evaluation (PACE)' which compares
    different approaches to the clinical management of patients with CFS/ME.


    Paid to Action for M.E.: consultancy fee: 4,312

    --------------------

    http://www.publications.parliament.uk/pa/ld/ldcumlst.htm

    House of Lords Session 2009 - 10

    Cumulative list of unanswered Questions for Written Answer

    No. 14 18 MARCH 2010


    Tabled on the dates in bold and due for answer by the dates in brackets.

    The Government Department responsible for answering each Question is shown in square brackets.

    [...]

    5 March (19 March)

    The Countess of Mar to ask Her Majestys Government how much funding was provided by the Department for Work and Pensions for the Medical Research Councils PACE Trials; from whom they received a request for funding; who authorised the release of funds; and whether the Department has funded any other MRC research projects. [DWP] HL2623

    -------------

    So could you please provide the reference source for your statement:

    http://www.cfstheresistance.com/my-press-article.php

    "The Psychiatrists are even trying to block M.E Help Groups. Association For Young People With M.E (AYME) have part funded Professor of Psychiatry Peter White's ongoing PACE trials."
     
  12. Uno

    Uno Senior Member

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    Brighton, United Kingdom
    Hi

    Sorry for not responding last night - had a bad few days. I didn't realise that paragraph was still in there regarding AYME funding the PACE Trial....(idiot) so I'll delete that pronto. That paragraph was meant to be about Crawley's funding and her links with the PACE Trial....

    AYME didn't fund the Pace Trial, this I know but...they are in receipt of a Section 64 Department of Health grant that pushes the NICE Guidelines..so they are getting a fat wad of cash to promote NICE and the Department of Health's stance...which is disgusting. If you want some references for the Section 64 stuff then let me know and I'll dig it out.

    Plus their adviser Crawley received, what was it, 160,000 from the Linbury Trust for her L.P...and who is a patron and fellow of the Linbury Trust..Anthony Cleare himself whose delightful collegues at the Iop are running the PACE trial. So AYME funding it was an error of statement on my behalf yes, but the corruption going on with these people isn't far off.

    Regarding the Psychiatrists trying to effectively block M.E Help Groups, not their own of course, they recommend joining AFME, AYME etc etc and of course encouraging the patient to wholeheartedly swallow their poision believing it is chocolate coated. They're not coming out with it outright and saying "WE DON'T WANT PATIENTS TALKING TO EACH OTHER" or discrediting certain groups through the press or whatever but doing it ever so slyly.

    Patients are increasingly being encouraged by specific clinics that have links with Kings College and Barts, i.e Wessely and White as part of their occupational therapy that attending independent support groups are 'not advised' as patients could get misinformation about their conditions and I was told myself that talking to other sufferers would be bad for my condition and given a speech that groups outside specific frameworks (i.e AYME etc) lack the relevent knowledge and people that are members of these groups have less chance of recovery as they get sucked in to focusing on what is wrong with them rather than helping themselves. The speech as it were went on and on and it was at this clinic where I was asked if I was abused as a child.

    Promoting these 'beliefs' to patients who just don't know better is in my view really dangerous not to mention devilishly sly tactics...almost brainwashing. How many other innocent employees of these clinics are being fed the same load of tosh to give to their patients.

    Sorry for going off topic folks! Good luck x
     
  13. fred

    fred The game is afoot

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    Uno, where did you see that Anthony Cleare is a patron of the Linbury Trust? This is from the Trust's latest annual report.

    http://www.linburytrust.org.uk/
     
  14. Uno

    Uno Senior Member

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    Brighton, United Kingdom
    Dr Anthony Cleare, Senior Lecturer (Linbury Trust Fellow), Department of Psychological Medicine, Kings College Hospital, London - http://www.dh.gov.uk/en/Publicationsandstatistics/Pressreleases/DH_4025188

    He was a fellow from 1998-2001...
    right smack bag in time to recommend stuff for PACE....
    Over a third of the CMO Key Group, Walker contends, believed 'CFS' to have a psychiatric aetiology: Dr Anthony Cleare was a Linbury Trust fellow and member of the Institute of Psychiatry alongside Wessely; in 1999 the Linbury Trust said, 'it is contributing to the deliberations of the Working Group through its Senior Research Fellow, Anthony Cleare'; Trudie Chalder is a behavioural psychologist at King's with a reputation for researching Wessely's beliefs re. CBT; in the years 1999-2001, Chalder received a grant of 43,578 from the Linbury Trust to research CFS - Cleare and Wessely co-authored the study; Chalder and Wessely also received 337,713, 1998-2001, from the Health Dept to research CBT; Dr Alison Round, a Public Health official from Devon; Dr Peter White, well known for his CFS clinic at Barts which practices Graded Exercise programs and psychotherapy ; and Professor Anthony Pinching, Director of AfME, who promotes GE/CBT for CFS.
     
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Funding of 164,000 is awarded by the Linbury Trust and the Ashden Trust for the proposed pilot planned to start in September.
     
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    So is he a Patron now, or was he formerly a fellow?

    It's a little confusing.

    I'm sorry Uno, but Prof Pinching is not a Director/Trustee of AfME.

    He has been Medical Adviser but he does not hold a seat on the Board of Trustees so it is not correct to refer to him as a "Director". He has already announced, a couple of months ago that he is standing down as AfME's Medical Adviser.
     
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Uno, I've had another look at your website and I cannot see any contact details which set out who owns and manages the site and is responsible for its content.

    I note that you have a link to one of my own sites on your links page.

    I am not comfortable having links to my site (or for that matter my material being reproduced on sites) where the owner is not prepared to be transparent about who is responsible for the content.

    I shall be pleased if you would remove all links to my site and any material from any of my sites or postings elsewhere that is authored by me that may have been republished on your own website.

    Many thanks

    Suzy Chapman
    _____________________

    me.agenda@virgin.net
    http://dxrevisionwatch.wordpress.com
    http://meagenda.wordpress.com
     
  18. Jenny

    Jenny Senior Member

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    This is a bit of a long-shot, but can anyone recommend a GP in North London? I'm going to have to change mine. My current one won't give me any more sick notes unless I go to see him. But I'm too ill.

    He refuses to visit me, saying, 'things are too hectic'.

    Can anyone recommend a ME-sympathetic GP in Muswell Hill, Highgate, Crouch End or Hornsey?

    Jenny
     
  19. Uno

    Uno Senior Member

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    Hey Jenny

    Sorry your GP is being a waste of time, mine is too. I have a friend in Highgate with M.E - I can see if her doctor is any good and ask her if she has any information if you like. With GP's being the so called Gatekeepers it's so important to have one onside. My old doctor in London was amazing..the best doctor ever near Liverpool Street station.

    Suzy - the Pinching Director quote, not my words I'm afraid...taken from erythos.com/RiME/Docs/NL0403.rtf. He was still chief advisor at the time of some of my writing, a lot of it is in editing stage at the moment. The person who was meant to edit most of it and cross reference everything did about three lines then gave up so I've had to start again doing most of it which is hard work, especially when I can't find links and half the original sources are no longer on the web.

    I have removed the link to your website and the relevent article - I thought that as long as I stated it was by you it was publishable but if you don't want it on there fair enough.

    I haven't put my real name to my site no...although I have stated that by no means is the site offering medical advice, treatment, recommendations, advice on benefits and suchlike. I don't see what difference it is if I put my name to it...if they want to come for me, let them come.

    The whole point is that it's not just my site but the work of a collective, seen as a movement of people, the everyman so to speak..people are contributing their thoughts, articles, stuff from medical professionals (anonymous of course) is on its way. Just look out for the Man Behind the Curtain...

    I won't take the emphasis of this thread away any longer...if you wish to ask me any more stuff just drop me a PM.
     
  20. Jenny

    Jenny Senior Member

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    Thanks very much Uno.

    Jenny
     

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