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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Newcastle, UK: Drs Spickett/Newton - any experiences?

Discussion in 'ME/CFS Doctors' started by Sasha, Sep 2, 2011.

  1. Sasha

    Sasha Fine, thank you

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    Prof Julia Newton specialises in autonomic dysfunction and has done research on ME and orthostatic intolerance, funded by both the MEA and MERUK. She works in association with Dr Gavin Spickett, who is a consultant immunologist and heads up the "North of Tyne CFS/ME Rehabilitation and Management Team" (listed on the Newcastle PCT website as the "Chronic Fatigue service" and found in the site directory under the pathway Mental Health/Psychology in Healthcare/Health Psychology Services for Adults/Chronic Fatigue).

    I am trying to fathom what would happen to me if I asked for a referral! On the one hand, Prof Newton has done ME-charity funded research showing clear associations between fatigue and autonomic dysfunction in ME. She has written in a journal calling for autonomic/EEG testing as standard when patients are referred to CFS clinics.

    On the other hand, she describes CFS as "commmon" and in 2% of the population (presumably Oxford criteria since the prevalence of true ME is supposed to be about 0.2% and rare). And although Dr Spickett is an immunologist who refers you to immunologists, this is what the Chronic Fatigue Services website says it offers:

    "The chronic fatigue team provide multi-disciplinary team assessment to patients. This can lead to group work or one to one help with pacing, graded activity, adjustment issues and associated emotional difficulties such as anxiety and depression" even though "Your GP can make a referral to Dr Gavin Spickett consultant in immunology at Royal Victoria Infirmary Newcastle upon Tyne, who will allocate patients to consultants in infection and tropical medicine."

    I'm very confused about whether they're just offering a bunch of occupational therapists giving basic GET/CBT to ill-defined "CFS" patients as their website suggests (standard practice across NHS "specialist" ME/CFS services) or whether they are, as suggested by their published material elsewhere, thoroughly testing patients to exclude wrong diagnoses and then giving them EEG/OI diagnostic tests. And I'm wondering what the point is of those immunologists.

    This talk was given to EDMESH by Prof Newton a year ago. It suggests that you get OI testing and OI treatments and also mentions "individualised activity management" aimed at staying below the anaerobic threshold - this sounds more like Staci Stevens's Pacific Fatigue Lab stuff than NHS GET. She seems to be saying clearly that CFS patients have problems with lactic acid and inflammation.

    Any experiences, anyone? Please PM me if you'd rather not post publicly.

    I'd like to get my ME-related OI treated but I don't want to end up in the jaws of another joke NHS CBT/GET centre (I've already had that locally, to zero effect).
     
    golden likes this.
  2. ukxmrv

    ukxmrv Senior Member

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    I've not asked for a referrel as all the other ME patients I know have been turned down when they try to see Dr Newton direct.

    Really not sure how good the other staff are there and share your concerns. Maybe you could find the local ME support group from the MEA list and give them a ring to ask?
     
    golden likes this.
  3. Sasha

    Sasha Fine, thank you

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    Hi ukxmrv - apparently the mechanism for referral is that you first ask to be referred to Dr Spickett and (based on some preliminary results, I think, that presumably you get your GP to do tests for) he either hangs onto you or refers you on to her. I was told they work closely together but you can't ask for direct referral to her.

    I wondered if ME patients only got referred to her if they showed signs of orthostatic intolerance. Do you know if any such people didn't make it through to Prof Newton?

    That's a good idea about phoning the local group. I'm getting such a mixed picture from what's on the net - a sort of, "yes, there are real disease processes going on and the effects of exercise are devastating" and "we manage it through increasing exercise". This may be my confusion but many others on the net seem equally confused! I'm surprised that the Newcastle team are not aware of how some of this stuff is coming across to patients and are not being careful to state their position clearly. I think they are in a position to do a great deal of good but there seems perhaps to be a discontinuity between what their research shows them and the treatments they offer.
     
  4. Morgaine

    Morgaine

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    I've seen Dr Spickett, I've PM'd you.

    Sent from my HTC Desire S using Tapatalk
     
  5. Sasha

    Sasha Fine, thank you

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    Thanks, Morgaine, that's really kind of you - I've responded via PM.
     
  6. Firestormm

    Firestormm Guest

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    Hey Sasha,

    Have you thought to post the question on the MEA Facebook page? I do believe Prof Newton recruits for research but I don't know if she holds surgery.

    Regarding the prevalence of CFS/ME or even ME. It is a common condition if you believe the prevalence of 0.2-0.5% that is cited as leading to the estimated 250,000 patients in the UK.

    I think I understand though where you are coming from. In 2003 the publication Neuro Numbers: http://www.neural.org.uk/store/assets/files/20/original/NeuroNumbers.pdf Citing the source for these data. This led at the time to a prevalence for Myalgic Encephalomyelitis of 240,000.

    Same percentage prevalence as used today more or less (adjusting for population growth). Compared to the prevalence data for other neurological conditions it is 'common' and not 'rare'. Though traditionally it was seen as being rare I tend to agree.

    Not the actual source: A study presented to Parliament in 1999 (from memory) relating to prevalence since 1919. So it kind of blew the rarity of the disease out of the water I guess. You know it is odd in a way you should mention this as I noticed in the Spectator Professor Wessely was citing a tale from one 'expert' neurologist on ME who also said the condition was 'rare' hence his disbelief (in part) that the patients he was presented with and claiming to have 'ME' didn't.

    Edit: I looked up that source again for you:

    Dowsett E G, Richardson J The Epidemiology of Myalgic Encephalomyelitis (ME) in the UK 1919-1999 Evidence submitted to the All Party Parliamentary Group of MPs on ME 23.11.99

    The prevalence cited was actually 0.3-0.5% - sorry I was a little in error there not too bad though considering :cool:
     
  7. Sasha

    Sasha Fine, thank you

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    Hi Firestormm - I just can't cope with Facebook (cognitive problems) but that was a good idea!

    I suppose I'm not being very rigorous in my use of "rare" and "common" but Prof Newton is calling the prevalence of CFS 2% and "common" whereas like you, I think the figure of 0.2 (ish!) % to be the more realistic one.
     
  8. Firestormm

    Firestormm Guest

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    You up to using the MEA Contacts page? Or send them an email maybe: meconnect@meassociation.org.uk You don't have to be a member to enquire.

    Good luck.
     
  9. Sasha

    Sasha Fine, thank you

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    Hi Firestormm - I think first I'm going to get a copy of the DVD of the talk and see what Prof Newton actually said there. If there is more detail than was in the edmesh site summary I will post it!
     
  10. Sasha

    Sasha Fine, thank you

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    I've been watching the DVD of Prof Newton's talk.

    She didnt go into huge detail about treatments. She mentioned that three randomised controlled trials have been done using fludrocortisone and showed no benefit for PWME but she believes that they didn't choose the right patients.

    Apart from drugs she mentioned tilt training. This is a treatment that they use in syncope in general. They've already done a small study with PWME where the trend was towards improvement and they want to do a larger trial (some people on the forums have noted that the effects of the small trial are not impressive).

    She mentioned that you should drink 2.5 L of fluid a day. She also said that some people benefit from drinking up to 5 cups of either tea or coffee (for the caffeine). Beyond 5 cups you just lose the extra fluid as urine. She said that some people with low blood pressure benefit from salt (I think that some people may have low blood pressure when upright but high blood pressure when supine so Im not sure how across the board that recommendation would be and I dont think she was recommending self-treatment).

    She was asked about exercise and said that they did testing to determine each persons anaerobic threshold and then got them to limit their activities to you 80% of that heart rate. She said that for some people the anaerobic threshold was very low so it might be two beats per minute above their normal heart rate. She said that they therefore tailored their recommendations to each patient and that she didn't like the use of the word exercise; they call it activity because it might be something like loading the dishwasher rather than people's usual idea of exercise which is something like going for a run.

    She said that if you got a referral to use their service you are seen by Dr Spickett, herself, or someone in infectious diseases.

    One interesting thing that she did say was that in Germany, low blood pressure is recognised as a medical condition and that CFS is therefore viewed as a different disease there (since such a high proportion of PWME have OI and low BP). People get treated at specialist clinics by people who specialise in hypotension. In the UK, of course, theres only high BP and good BP.

    Her research, which has been funded by MERUK, seems to show that the degree of fatigue that people experience is strongly related to the number of orthostatic symptoms that they have, and that it seems to be more effective to treat their fatigue via the treatment of their orthostatic intolerance than to try to attempt to treat the fatigue itself directly.

    It is clear that the testing that they offer their clinic is more sophisticated in terms of detecting orthostatic intolerance and I had the impression that every patient who gets a referral fare does get some testing, even if it's not a tilt table test. There is another place with the same kit in London but Id be nervous about going somewhere that doesnt understand ME.

    For myself, I think that Newcastle is so far away that the journey would be potentially quite damaging to my health. For now I think I will discuss in my OI problems further with my GP and see what treatment he is willing to give me for it and see if it would be possible for him to get some support at a distance from the Newcastle clinic.

    For what it's worth, I didn't have any impression that all that she believes they need to be a psychogenic disorder. If I was closer to Newcastle, Id try to get a referral.
     
  11. Firestormm

    Firestormm Guest

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    Thanks Sasha.

    What date was the talk on that DVD and how might one get hold of a copy I wonder?

    So it seems it is possible then to get a referral to her 'service'. I hadn't realised that before. Will try and discover more.
     
  12. Sasha

    Sasha Fine, thank you

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    Hi Firestormm - it was Oct 2010 and you can get a copy of the DVD from the email address near the bottom of the web page that summarises the talk (I don't want to put it here in case he gets a load of spam, not quite sure how that works!).
     
    sianrecovery likes this.
  13. carole Carrick

    carole Carrick

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    Hi Everyone...I am due to go see Dr Spickett in a week or so after having been referred by GP. I've had ME 14/15 years and was initially diagnosed up In Edinburgh. My GP wondered if they might have some help for me so I go there at the beginning of July. Like you Sasha I am conflicted and wondering what they will offer me. Did you eventually go?

    morgaine...could you PM me please with any advice/info you have on this clinic at the RVI or on Dr Spickett please.

    Thanks ...Carole. :)
     
  14. Sasha

    Sasha Fine, thank you

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    Hi Carole - I tried to get a referral but couldn't get one and even if I had, I'd have been trying to get them to advise my GP on doing tests here if possible to save me having to travel. The journey would have been brutal. If I was nearer, I'd be keen to go at this point - the more I read about their work, the better and better an impression I get about their work.

    Did you know they've got a Facebook page?! It's here:

    https://www.facebook.com/pages/ME-CFS-Research-Newcastle/526359017390431

    Morgaine - did you see this?
     
  15. carole Carrick

    carole Carrick

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    Hi Sasha...thank you for replying so quickly. My original appointment was back in December last year but I was simply too unwell to travel back then and had to defer...the earliest appointment they could give me was July so I can see by that they must be pushed for places. I know their clinic is only on Mondays.

    I've had all this time to research them/him but it's just flown by. Typical me to leave it til the last minute. I would hate for to go there and be told CBT and GET...that would feel like an insult to me after all these years!

    I am a member of their group but that's more the research side that Dr Newton does rather than their clinic...at least that's how I perceived it but I've just sent them a message and will ring them this afternoon once I have my ability to verbalise what I want to ask lol.

    I agree they are doing wonderful research work but I am simply not sure it reflects in their clinical care. :(

    thanks again...C.x
     
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  16. golden

    golden Senior Member

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    This >>>>" "The chronic fatigue team provide multi-disciplinary team assessment to patients. This can lead to group work or one to one help with pacing, graded activity, adjustment issues and associated emotional difficulties such as anxiety and depression" even though "Your GP can make a referral to Dr Gavin Spickett consultant in immunology at Royal Victoria Infirmary Newcastle upon Tyne, who will allocate patients to consultants in infection and tropical medicine."

    put me right off !

    'Chronic fatigue ' 'multi -disciplinary team'..... CFS/ME....

    :(
     
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  17. peggy-sue

    peggy-sue

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    There can be a huge gulf between academic research at a teaching hospital and the medical side of it. They're simply not connected. If Prof Newton is an academic, ( and so university based, not hospital) she's not neccessarily (and probably not) a medic and will not have anything to do with patients or their treatment at all.
     
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  18. Sasha

    Sasha Fine, thank you

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    I think she gets patients referred to her if they have OI. My memory is a bit vague on this now, though.
     
    carole Carrick likes this.
  19. peggy-sue

    peggy-sue

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    She might be a clinician - I simply don't know, and I'm happy to be corrected. :)

    It's just sometimes folk might think they could see some "expert Professor" but if they're a Prof from the academic camp, rather than medical, it's highly unlikely.:(
     
    carole Carrick likes this.
  20. carole Carrick

    carole Carrick

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    dr newton is a practising clinician as well as a researcher...she sees patients with POTS/OI at the RVI. I know a few who have been referred to her from their GPs and from outside the Newcastle area too. :) She specialises in Primary Biliary Cirrhosis but has branched into the ME/cfs field because of the fatigue aspects in both.
     
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