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Beware of Breakspear.

Discussion in 'ME/CFS Doctors' started by brenda, Sep 30, 2014.

  1. brenda

    brenda Senior Member

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    http://www.breakspearmedical.com/files/publications.html

    http://www.breakspearmedical.com/files/documents/Issue37Summer2014WEB.pdf

    Looks like it has sold out to the Wessely lobby.
     
  2. Valentijn

    Valentijn Senior Member

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    Ugh. No exception is given for ME/CFS, nor mention of the surveys showing exercise is harmful for them. Not to mention the research showing 0 objective improvement even in poorly defined groups.

    A lot of cherry picked and irrelevant data. Maybe it's be productive to email an objection or some such - the Dr writing the piece focuses on allergies and environmental issues, not "chronic fatigue".
     
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  3. Valentijn

    Valentijn Senior Member

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    I left a comment on their blog which might or might not get posted, but it's not a group that I have any good expectations of. Too much "chronic fatigue" and not enough ME.
     
  4. manna

    manna Senior Member

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    That's a shame she's said that. I've read through some of their articles and newsletters and was generally impressed. I don't think it implies she's with Wessley et al though. Perhaps she believes that M.E., as a physical illness, can be helped by exercise? She's wrong if so.

    It was from Breakspeare that I got the info to avoid cruciferous veg if you had Crohns type symptons; it was a huge help for me. Take the good and leave the bad. I try not to reject everything someone says on the basis of what I see as misguided info. This is a pretty big goof though. That's not that I defend Breakspeare as a whole. I don't know enough about them. I nearly saw them a few times but it was too exoensive for me. I was looking for bio-marker and written letters to help with applying for Disability money, not treatment.

    Maybe link this thread there after it's run it's course?

    I don't mind the "exercise" word unless it's together with the word "aerobic". Carefull stretching, yoga etc is ok for me, and helpfull, as long as it's within my confines and doesn't become aerobic in nature.
     
    Last edited: Sep 30, 2014
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  5. Min

    Min Guest

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    I have always understood they are good and thorough if you can afford them, but do have an emphasis on allergies.

    Surely what we really need to beware of are the NHS fatigue clinics and other psychobabble like the Lightning Process and the Chrysalis effect?
     
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  6. xrunner

    xrunner Senior Member

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    I saw Dr Monro a couple of times and she never suggested I exercise or that exercise may benefit my health, nor did I hear that from other of her patients I knew at the time.
    It all depends on your diagnosis which in the article wasn't ME.
     
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  7. brenda

    brenda Senior Member

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    So who in the UK gets a diagnosis of ME?
     
  8. manna

    manna Senior Member

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    I have a diagnosis of M.E. from the NHS and a private Doctor. I believe aerobic exercise would have negative consequences for anyone with permanent fatigue, be that under the heading of CFS or M.E.

    Breakspear, as far as I'm aware, are one the only clinics in the UK that have a no chemical odor policy. As someone with MCS, that still says much for them; that they take MCS seriously. It's the only place I know at present where I would feel marginally safe to go for any type of testing. They test and diagnose MCS too. You can have vaccines without the additional chemicals that are added to them. They promote an organic diet. They certainly believe in a strong physical basis for illness in general as far as I can make out.

    Shame about the aerobic exercise thing though. Just read the article, not good. I like Breakspear in general but this is still a misguided idea. M.E. or CFS is perhaps unique in regard to the fact that aerobic exercise doesn't help and we are not Parkinson's patients or mice, so extrapolating studies done with those is not relevant here. I can see why someone might think they could be but it's not correct ime. I wonder what she would say in reply to the same question from someone who isn't "recovering" or has M.E. Should they exercise aerobically? That doesn't make it ok for someone who's says they're on the "cusp of recovery". I find the whole improvement thing so ambiguous.

    I'd still use Breakspear but then I'm not looking for treatment. From what I could gather, that was either not their focus, or they don't know how to treat it successfully. But then how can any clinic make you eat well etc when you get home? A large portion of recovery will always be down to the individual.

    The newsletters/articles linked in the OP are still a worthy read I think. I'm glad Brenda has brought this up (Wessley association aside).
     
    Last edited: Sep 30, 2014
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  9. Valentijn

    Valentijn Senior Member

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    So my comment from Sept 30 was:
    To which they responded on November 6:
    Based on their pattern of publishing, the next edition will be for Winter or Winter/Spring.
     
  10. ukxmrv

    ukxmrv Senior Member

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    I'm still not sure if exercise is the best recommendation for someone who thinks that they are recovering from CFS or CF.
     
  11. Valentijn

    Valentijn Senior Member

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    Yes, I'm very curious to see how they address that, if they do properly address it.
     
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  12. Valentijn

    Valentijn Senior Member

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    They finally published another bulletin at http://breakspearmedical.com/files/documents/Issue38Spring2015web.pdf and it did clarify their stance regarding exercise and ME/CFS.

    Basically GET is "usually" part of their treatment program for "chronic fatigue", it works, it doesn't cause harm unless done inappropriately, and people with CFS and other diseases are "fatigue patients".

    In conclusion, Breakspear has joined the quackfest and has no bloody clue of what "CFS/ME" is.
     
    Last edited: Apr 5, 2015
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  13. bertiedog

    bertiedog Senior Member

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    I have been to BS twice and saw Dr M. Have to say I wasn't impressed. It was at my suggestion that I be tested for viruses and CPn which they did do. She didn't ever suggest that Lyme might be good to test for. I went away with a ton of supplements for the mitochondria, all at very high doses and guess what I couldn't tolerate them and within a month or so I was back to my normal supplements to support the mito. The supplements from BS were very expensive but I only ever was only to take a few of them because of extreme reactions. The doses were way too high for me, I just don't need those sort of doses.

    One year later I had another appointment with her and this time I had the cheaper Autonomic Testing done. This was well worth it for me because it really showed up a problem with the lack of oxygen in my cells and also too high CO2. I had gone for a very short swim that morning at the hotel where I was staying and didn't have any time to rest really so when I had the test I was feeling probably way worse than I would normally be. (I cannot really swim these days because it nearly kills me after. I used to swim 32 lengths, 3 times weekly up to 2000 when I crashed).

    During the test I had less than 50% of the oxygen in my cells when they were stressed by me taking 6 deep breaths in one minute. It had taken ages for Dr Juli to get a proper reading to start off cos everything was so poor. Dr M was quite shocked by my results and said that this was very bad for me and that I should start breathing oxygen from a concentrator for 3 times daily up to an hour at a time. She said it would make a big difference to me and I am very grateful to her for this because she was right. I have hugely benefitted from having my own oxygen concentrator, (only from EBay), its been 3 years now and I don't need to use it for an hour at a time, only half an hour and some days I could miss the lunchtime session without any problems. I still find I crave it first thing in the morning after breakfast to get me going and also after my evening meal when I feel everything is used up. ( I am now doing between 7000-8500 steps daily and can definitely feel it from 6.30 pm every evening.)

    Referring back to my appointment with Dr M when it came to why I might be so lacking in oxygen in my cells, Dr M said that my brainstem was irritable and when I asked why might that be she said it was probably I was allergic to many things and should undergo her famous desensitisation treatment.

    I didn't believe her for a minute that this was the reason because as I am on daily steroids for adrenal insufficiency I don't tend to react to things apart from MSG and alcohol so I have not gone down that route and haven't been back. Of course last year after reading of so many people on PR testing positive for borrelia and co-infections I sent my blood off to Infectolab and it came back with strong positives for borrelia and its various subtypes plus a probable positive on Ehrlichia and this also fits in with my history of annual visits to the New Forest with my dogs over more than 25 years and often getting unexplained bites which would come up in massive lumps.

    Since last August I have been going through a sort of modified Cowden protocol and have had good benefits in exercise tolerance and the only downside has been this past month when I came out with a severe throat infection which was caused by 6 weeks of unrelenting stress which was hard to avoid because I run the local Fibromyalgia support group and had some major problems with a couple of committee members who very obviously have mental health issues. I left it too long in getting antibiotics and then stupidly took the one my GP gave me which was Penicillin, forgetting that the bugs I have are resistant to it and I was getting worse. Thankfully I remembered I had got some Azithromycin from last year that I had ordered on-line and finally after 5 days of that I started to feel well again and unexpectedly the Azithromycin seems to have been excellent for me because I seem better than I was before getting the virus and then the throat infection.

    Sorry that I have gone on a bit but I wanted to be fair about BS and I am extremely grateful to them for helping me over the lack of oxygen issue because I can lead a much better life just because of my oxygen concentrator. Maybe as I continue to strengthen my immune system with the Cowden herbs plus others, I will continue to need less of it.

    On a final point, there is no question that BS is very expensive.

    Pam
     
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  14. CantThink

    CantThink Senior Member

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    Thanks for clarifying @Valentijn

    How old school of them! :eek::whistle:
     
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