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Breakspear Medical in the UK

Discussion in 'ME/CFS Doctors' started by Skyline, Apr 19, 2013.

  1. Skyline

    Skyline Senior Member

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    Bangkok, Thailand
    I happen to be near Breakspear Medical (http://www.breakspearmedical.com/files/chronic.html) and became aware of a high profile recovery story from their clinic with Clare Kerr (took 5-7 years).

    It doesn't seem like there are any threads on this clinic - has anyone got any information on them or had experience with them?

    Their approach is very much 'immune' focused, which I am not up to speed on, although I see similar ideas to those used by John Chia and others about the issues with immune response.
  2. Skyline

    Skyline Senior Member

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    Bangkok, Thailand
    Apologies, for some reason the search didn't pick up anything the first time. The second time I found a lot of references for them. This new thread is unnecessary.
  3. Hip

    Hip Senior Member

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    Hi Skyline

    I have attached the pdf file that I received from Breakspear Medical when I enquired about their ME/CFS treatment program. This file might be of interest to you.

    The contents page from this pdf file is as follows:

    In the email I received from Breakspear (in early 2012), they said:

    Attached Files:

    Valentijn and justy like this.
  4. EnduringAngel

    EnduringAngel

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    "Hampshire, UK"
    I would be very very wary. Some of my friends have been helped there, but their treatments have cost 20-30 thousand pounds.
    They seem to do the same as myhill, but a LOT more expensive.
    They are money hungry.
    I paid 2 grand for tests, which turned out to be a waste and have no money savings. Total regret.
    However if you have the money, then go for it, prof puri has just joined there and is lovely.
    Feel free to PM me for more info.

    A x
    Jon_Tradicionali likes this.
  5. Esther12

    Esther12 Senior Member

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    I've heard they're expensive, and often of no use. I expect that putting the money into medical research would be more useful that putting it into their pockets.
    vli likes this.
  6. EnduringAngel

    EnduringAngel

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    "Hampshire, UK"
    I think if you had a large amount of money they probably could and would help. They do do useful treatments, but you would need to do all of it, I doubt just a few pieces of the puzzle would help.
  7. ukxmrv

    ukxmrv Senior Member

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    I heard of one NHS patient who managed to get to the Breakspear and her appointment was paid for by the local NHS PCT. Not seen an update since then.

    My reason for not attending has been due to the costs. Not only for the testing but for the treatment. Friends who have been seen there have paid out thousands of pounds and I don't know of anyone who has recovered or made massive improvements with them.

    What I have been doing is spending the money instead on what testing and treatments I can afford to buy.

    If I ever here from the NHS patient who went there again I may consider approaching my own PCT.

    p.s. I'm not sure if it is entirely accurate to compare the Breakspear to Dr Chia. From the impression I have had from patients there it seems as if they are looking at a number of different possible factors (like LYME) and not concentrating on enteroviruses or the immune system as much as some USA docs. I don't know of a patient who has had a stomach biopsy for a VP1 test there as an example. It seems that they use a broader brush and one patient I know ended up with her dental fillings removed.
  8. Valentijn

    Valentijn Activity Level: 3

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    It does look like the tests they run are pretty good, based on the brochure ... similar to what Dr Meirleir orders, and that will probably account for a couple thousands pounds right there. I think the problem might be with their treatments for immune problems - vitamin C, "other anti-viral agents", and gamma globulin. Unless those "agents" are actual anti-viral drugs, they're trying to treat chronic infection by basically boosting the immune system a bit, which seems like a pretty weak approach for serious infections.

    But it might be worthwhile to go for the tests anyhow. Then you can have a better idea of what really needs to be done for improvement, and at least some other ME specialists are happy to take tests results from other sources into account.
  9. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    Erm, and I just noticed this in their brochure:
    So, uh, yeah. I wouldn't bother with them for treatment! Just testing, if it's not available elsewhere in the area.
    Jon_Tradicionali likes this.
  10. TheChronicSituation

    TheChronicSituation

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  11. EnduringAngel

    EnduringAngel

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    "Hampshire, UK"
    Your experience sounds similar to mine. They are so quick to take money. I spent 2 grand on tests just for EBV and lyme disease. I have no more money. Wish I had never bothered.
    You will get more answers for less money via dr myhill.
  12. maryb

    maryb iherb code TAK122

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    I think you'll find you have to pay up front for any test/ kits before they are sent out. Standard procedure.
  13. bertiedog

    bertiedog Senior Member

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    I have to say that from personal experience this statement is not correct. I had the Autonomic Testing done last year at Breakspear and it showed I had an extremely low level of oxygen in my cells and that I would benefit from an oxygen concentrator which I could use every day. I hired one from them for a month and got such benefits that I decided to buy one myself and I continue to get benefit from it every day.

    Dr Munro also recommended some supplements to help my mitochondria and again these have been very helpful. Taking 2 daily got me out of a crash I had earlier in the year after I had stopped taking them for many months.

    Without the Breakspear I wouldn't have known my cells were so low in oxygen that as Dr Munro said to me "this is extremely bad for you." I do agree they are expensive but they don't push anything on you and there is always an estimate first.

    Pam
    Valentijn likes this.
  14. ukxmrv

    ukxmrv Senior Member

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    It's really buyer beware with clinics and doctors here. Met Dr Munro at a conference more than once and she seems caring and knowledgeable. It's the expense that frightens me there but we are running out of doctors who can carry out testing and treatment. Have a feeling that Dr Munro has already "had her collar felt" by the GMC.

    I've had friends seen at the Breakspear with varying results but mainly not positive as their money seems to run out so quickly.

    The credit card stuff sounds like the office processes orders and that's the why they do it. I've always paid up front from any private tests done by doctors in the UK and it can be months until I get the results. Sounds like it is your first experience of private medicine?

    When approaches a clinic or a doctor one needs to have any idea of how much it will cost and clear priorities. If the immune/viral tests return useful information you could have a path for treatment but as it is private you'll need to pay for the drugs. That's where I am stuck now.
    merylg likes this.
  15. brenda

    brenda Senior Member

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    I am the NHS patient who has been funded by my PCT, first off for tests which came to £3,500, then further funding, for Lyme treatment after positive testing, amount and treatment, which has been proposed - IV antibiotics via port, time allowed (may be according to NHS guidelines of one month - totally inadequate) unknown as yet. I feel the treatment may be unsuitable. Travelling expenses via ambulance car and overnight accommodation were also paid for but only for first visit and then by DSS which has now been pulled. I agree with much of what has been said and will give a full account when I am no longer a patient but l will say that if l had to pay myself l would go elsewhere. I was also granted funding 12 years ago before l knew l had Lyme but after being infected, but in the end was too sick to travel. I can't really say why l managed to get funding. I had also been to Airedale Allergy center which is now closed and received desensitization treatment which made me worse. I had some private testing done previous to BS such as gut profile and organic acids from Metametrix and a positive Lyme test done in Germany which my GP said was not acceptable. I have had ME for a long time and Lyme for 13 years.

    ps of course it is the decision of the GP now over funding since the disbanding of the PCT.
    ukxmrv likes this.
  16. Simon Gordon

    Simon Gordon

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    I consulted Breakspear in Q4 2007 and had a barrage of tests done, I spared no expense. In Q1 2008 I started a course of Low Dose Immunotherapy, after about 5 weeks I had to stop because I was becoming very unwell, over the next three years I crashed very badly, in 2013 I'm still not back to where I was before I went to Breakspear.

    In 2012 I was deeply unwell and as a last resort consulted an NAET practitioner. Thankfully, I have had a positive reaction to this treatment and in my case I've found NAET to be far superior to LDI which I believe was the standard Breakspear treatment for a hyper-sensitive person like myself. I would strongly recommend trying NAET before trying LDI.

    When I told Breakspear of my negative reaction to the LDI they suggested a new protocol which involved infusions. I was far too scared to attempt this treatment. I stopped consulting them but not once did they ever get in touch to see how I was after the LDI. This rankles with me as I was very very ill after spending a large sum of money and getting a very negative reaction.

    In 2012 when I was in severe crisis I posted Up A Creek Trying To Find A Paddle, you'll find on this thread two other people who had a bad reaction to LDI at Breakspear:

    http://forums.phoenixrising.me/index.php?threads/up-a-creek-trying-to-find-a-paddle.18672/

    If it weren't for NAET I think I would have died last year, so I am a big fan of this treatment, whereas I think LDI can be very dangerous and Breakspear should be more professional in finding out about (monitoring) the patients who have been made much sicker after LDI treatment.

    I think Breakspear want to make people healthier, I just think you need to be super conscious that some people have had very bad reactions to LDI at Breakspear.
    golden likes this.
  17. brenda

    brenda Senior Member

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    Simon

    It has been suggested that I have LDI at B/S.

    I had it done at Airdale Allergy Centre, Keithley when it was open but it made me much worse. I read that 25% of people got worse. They said at B/S that they do it differently and I would be okay. Sorry to hear that you had such a bad experience but glad I have been warned. I have found them more interested in the money.
  18. maryb

    maryb iherb code TAK122

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    I too got worse after LDI at b/s - I spent the following year holed up in my bedroom as I couldn't even tolerate being anywhere else in the house. I am now intolerant and allergic to many things I wasn't before this treatment.
    Dr my-hill also does a de-sensitizing treatment but also tells you that in some cases it can make people worse. b/s did not.....
  19. Simon Gordon

    Simon Gordon

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    Brenda,

    I don't think Breakspear are money grubbers, they've just got very high operating expenses.

    I'd seriously investigate NAET if you need allergy/sensitivities treatment, there are about 20 people who do it in the UK.

    http://www.naet-europe.com/index.php?option=com_sobipro&sid=177&Itemid=397&lang=en

    Go for the most experienced practitioner. I've had around 110 treatments since August 2012, it costs me £40.00 per treatment. You'll know pretty quickly whether it suits you or not.

    All the best

    Simon
  20. maryb

    maryb iherb code TAK122

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    Simon - I tried NAET with a very experienced practioner - particularly for eggs, she said I would be okay but I still can't tolerate egg yolks - egg white occasionally, same as before. I agree its worth a go though, I made the mistake of travelling a ridiculously long way to see a therapist and it wasn't practical at all.
    Wouldn't touch LDI with a barge pole again.
    golden likes this.

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