Breakspear Hospital - worth trying?
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can you share a bit more? why for both?
Esther12
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Heard it's expensive and not very helpful.
I know it's well meaning, but it's a bit annoying to me that others can be more willing to pay for worthless medical stuff than donate to research, etc. My parents have said they'd be willing to pay for some BS treatment they've read about... I'd rather have a new TV tbh.
I know it's well meaning, but it's a bit annoying to me that others can be more willing to pay for worthless medical stuff than donate to research, etc. My parents have said they'd be willing to pay for some BS treatment they've read about... I'd rather have a new TV tbh.
sarah darwins
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A few months ago I was looking at options for getting specialist testing/treatment. Naturally, the Breakspear was one of the names that came up. In the end I formed the impression that their being situated in the UK has affected the way they approach ME/CFS, and not in a good way. And they certainly aren't cheap.
Threads like this one certainly affected my decision: http://forums.phoenixrising.me/index.php?threads/beware-of-breakspear.32850/
I did a lot of reading on this site and elsewhere before deciding what to do.
In the end, I did what @brenda suggests: I went to Belgium!
I was at Dr de Meirleir's Himmunitas clinic very recently for a battery of tests. Won't have results/treatment plan for a while but will be posting on here when I do. Most of his patients think very well of him, so I'm hopeful of getting a good insight into what's going on in my clapped-out body, and maybe finding a way to move forward.
Threads like this one certainly affected my decision: http://forums.phoenixrising.me/index.php?threads/beware-of-breakspear.32850/
I did a lot of reading on this site and elsewhere before deciding what to do.
In the end, I did what @brenda suggests: I went to Belgium!
I was at Dr de Meirleir's Himmunitas clinic very recently for a battery of tests. Won't have results/treatment plan for a while but will be posting on here when I do. Most of his patients think very well of him, so I'm hopeful of getting a good insight into what's going on in my clapped-out body, and maybe finding a way to move forward.
There is a fair amount of info on Breakspear in other threads:
http://phoenixrising.me/google-search?q=breakspear
http://phoenixrising.me/google-search?q=breakspear
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I've heard bad about Breakspear. It looks like they might treat ME/CFS as "fatigue" with a GET recommendation (which is a big no-no for this illness).
On Breakspear:
On KDM:
On Breakspear:
On KDM:
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Esther12
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I'm sceptical about KDM too. I've heard generally more positive things about him from patients (though still a bit mixed), but he seems to do stuff unsupported by any good evidence, and the results he gets don't seem worth the money to me.
I saw doctors there on/off for about three years. What follows is based on what I have experienced and seen as a patient there.
1. They diagnosed me with Lyme. Thanks to their treatment suggestions I recovered from being bedbound. At the time I met personally at least a dozen patients with Lyme which were recovering. But I also saw a few desperate cases where people were still struggling after treatment.
2. They are the only place I know in the UK where they understand MCS and sensitivities and have treatment that can help. I saw more people than I can count with all sorts of sensitivities being helped by their treatment.
3. They are expensive. However if, as I did, you tell the doctor you have limited funds and ask them to stick to treatment that is absolutely necessary (e.g. in my case oral abx for Lyme) then costs will be limited to testing and consultations and will come down significantly.
4. They do not treat ME/CFS with GET.
However drs have changed since my time, therefore what follows is a personal opinion. It seems to me there's now only one dr who has long enough experience in treating chronic infections. So if my health problems were mainly in this area I'd probably choose to go to Belgium. If instead I had major problems with sensitivities, allergies, mcs or similar symptoms I'd go there.
Best wishes
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Esther12, I think KDM is the only doctor I have seen that actually makes every decision based on evidence...do you have any examples of him making a decision that was unsupported by evidence? Perhaps you mean that it wasn't supported by sufficient evidence, but this is a matter of opinion, and there are plenty of doctors (other ILADS members, for a start) who would say that there is sufficient evidence.
Esther12
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Regardless of their opinions, the evidence isn't there. It's probably unfair to judge with hindsight, but we can now say KDM jumped too quickly on the XMRV stuff. There are a few things people have posted about treatments he recommends that just don't seem at all well supported by any good evidence.
If he thought he was having real success with his interventions he should be trying to conduct and publish trials on them, and nothing of real value seems to get published.
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In their most recent bulletin, they've gone with the "broad spectrum of fatigue" approach and they say that they do use GET for ME/CFS:
http://breakspearmedical.com/downloads/issue-38-spring-2015/Breakspear said:
They then go on to discuss some supporting psychobabble sources and NICE, which advocate for the use of GET in ME/CFS.
I also think their constant conflation of ME/CFS with "fatigue" is a huge problem, even aside from the GET aspect. We are not just one point on the bloody fatigue spectrum! If they can't understand that one very basic concept regarding ME/SEID, I can't see how they can hope to treat it appropriately.
I think they're well into quack territory now. I guess it's cheaper and easier than continuing to treat ME/SEID patients in a helpful and intelligent manner.
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sarah darwins
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In fairness, I don't think any clinician is in a position to do that. It takes public or corporate money to fund trials. I gather he follows relevant trials very closely, and is certainly in communication with researchers and other clinicians. His interviews suggest that he's more than happy to talk to anyone working in the field about his work. I'm not sure what more he can do.
It's perfectly reasonable to question his or any specialist's results. In fact, it's vital that we do it. ME/CFS specialists are necessarily working in experimental areas, necessarily because of the shocking lack of research funding for this illness.
I don't think KDM has ever claimed to have all the answers, or even many of them. His website makes no claims at all (something else which I found encouraging). He's primarily concerned with trying to figure out what's going on in individual patients' bodies, doing the sort of testing which it's very hard to get done elsewhere.
My first concern is to get alternative diagnoses properly excluded, something which hasn't come close to happening in 14 years of illness. That's now in hand. If Prof. de Meirleir then comes up with a proposed treatment plan, I'll discuss it with him and I'll ask him about previous results for similar presentations, which I believe is the approach most of his patients take.
Until some real funding goes into research, and until the spell of the ubiquitous psychogenic hypothesis has been broken, it's the best we can do. I don't have the scientific aptitude to undertake my own testing regime, so I thank God that there's someone like KDM who has devoted himself to providing this kind of service at comparatively affordable prices. If he's got even a few answers for me, I would see it as a few thousand euros very well spent. If he can help me get back to the stage where I can work, I'd see it as the best investment of my life.
It would be against their financial interests since most of their profit comes (my own observations) from
a) testing for allergies, sensitivities etc and
b) all sorts of IV treatments (lyme abx, antivirals, vitamins etc).
But then why would a patient go there and pay for GET or other psych treatments when those were freely available from the NHS?
On the other hand many patients going there (incl. me) have already been through the madness or experienced the damage of such treatments and the last thing they want is to hear again about those.
It's very likely they would immediately lose clients if they were to push such a treatment approach.
Personally I don't know anybody who's been there and offered this kind of treatment approach. We would have heard by now. In my case it wasn't even mentioned as a possibility or an option.
As regards to their approach to exercise as it appears on their bulletin, it doesn't sound to me much different from what Burrascano says in his Lyme guidelines (which they follow), that is at some point patients need to start exercising.
Burrascano sounds to me much more radical on exercise than B., as he says that people won't recover unless they exercise aggressively.
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as far as I know breakspear don't offer GET and CBT. I found them very knowledgeable about M.E etc - but very focused on expensive testing and allergy stuff.
It must be remembered that yhey have had to scale back on what they offer/how they treat due to problems with the GMC etc I believe this is the case, as they used to offer much more aggressive treatment for Lyme, but now it has changed - they are trying to look more in line with guidleines to take the attention of of them perhaps?
It must be remembered that yhey have had to scale back on what they offer/how they treat due to problems with the GMC etc I believe this is the case, as they used to offer much more aggressive treatment for Lyme, but now it has changed - they are trying to look more in line with guidleines to take the attention of of them perhaps?
They told me to exercise. Dr Julu told me to play tennis.
There you go!
Hopefully this was not his only suggestion...As a matter of interest what was your diagnosis? Was it Dr J who advised you or also your regular doctor?
As far as I know Dr J only saw patients for a specific autonomic assessment/test and his recommendations were merely based on the findings of the patients autonomic nervous system. Then it was up to your regular doctor to follow up on that advice or leave it.
In my case he only prescribed some medication to reduce my hypersensitivity, testing for allergies and heavy metals which he thought might be a factor in the abnormalities he had found. But again my case at the time looked pretty desperate and since I couldn't stand for five seconds there was no point suggesting I exercised and it wouldn't have been wise either as I used to suffer from lyme rage...