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Positive and interesting ME experience with an NHS consultant

Discussion in 'General ME/CFS Discussion' started by Sasha, Aug 20, 2013.

  1. Sasha

    Sasha Fine, thank you

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    We read a lot on these forums about some appalling treatment handed out to PWME who attend specialist referrals and hence I always go hoping for the best but prepared for the worst.

    Yesterday, I had my third and final appointment with an NHS infectious diseases consultant (I prefer not to say at which hospital for privacy reasons) concerning a possible reactivation of HHV-6. After many tests and much discussion we agreed that the tests neither ruled it in nor ruled it out and that the published literature on Valcyte for HHV-6 in PWME wasn't strong. I'd like to have taken the risk and tried Valcyte but I can understand why they didn't want to prescribe it and respect their reasons for taking that decision.

    Throughout these appointments I've been listened to respectfully, the burden of the disease on me has been clearly acknowledged, and I've had proper tests done (including an MRI brain scan). My consultant has in turn consulted with other specialists within the hospital and they've read the (considerable amount of) evidence I've presented. I was impressed with the way in which I was treated.

    But the main thing I wanted to pass on was something from yesterday's conversation. The consultant said that he and his colleagues are all convinced that ME is an immune disorder and they wish they had something to offer us. They're keen to do clinical trials. When they're all together in the pub, they talk a lot about ME and what might be going on and how they might be able to help us. They spend a lot of time talking about it, he told me.

    I asked whether he'd heard of the Rituximab trial and he hadn't so, not surprisingly, he's not absolutely on top of the literature, which would be pretty hard to do since no-one is producing a regular ME research digest for those outside the field (I think someone should).

    But there's clearly much more fertile ground there than I had expected and I was very encouraged that these doctors, despite what has seemed for so long like the iron grip of the BPS model, can clearly see what kind of disease this is and are looking forward to having something in the armoury against it.

    I don't know if that's the conversation we'd have had five years ago. I really do think that there's a momentum for change now.
     
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  2. Plum

    Plum Senior Member

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    Lovely to hear about your positive experience. I'm glad some Dr's are doing good work and we need a lot more of them. If he's so sure it's an immune issue why can't he offer anything to help boost immune function?

    It's nice to hear that your Dr was helpful but it's frustrating that you can't be given a wonder drug! You're much braver than me as I've given up on conventional Dr's!
     
    aimossy likes this.
  3. Sasha

    Sasha Fine, thank you

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    I assume it's not that simple, since my understanding is that some bits of our immune systems are underactive, some overactive, and my immune system tests (the bog-standard NHS ones, anyway) come up pretty much normal.

    Yes, I'd have liked a wonder drug (I did ask about Rituximab, and that was a 'no'!). It's not bravery - it's only very rarely that I've encountered someone who was unhelpful and the majority have been clear that they consider the issue to be an immune one and have been unable to help because they don't know of any treatment (to be honest, without specialising in ME and trying things out like the US specialists have, they'll never see enough patients to build up clinical experience to stand in for the absent trials).

    I know that others have been less fortunate in the doctors they've encountered but that's why I wanted to post - to balance people's perceptions a bit so that they can prepare for consultations in the expectation of being heard, because the way you prepare for that kind of consultation is very different from how you would prepare 'defensively' and has the potential to be more productive. Even if you're then disappointed, you'll know you gave it your best shot. I went with a much bigger list of productive questions than I would have if I'd expected the worst.
     
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  4. maryb

    maryb iherb code TAK122

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    Sasha maybe the consultants are thinking and talking even though they're not doing and thats great news - but the A&E lot and general are still pretty dire.
     
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  5. Plum

    Plum Senior Member

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    Sasha I completely agree. Every time I see a different Dr it's a clean slate. You have to give them a chance and see where things go from there. Sometimes they do surprise you!

    I think being open minded and not expecting miracles from the NHS makes way for a more productive experience and I am really happy to hear about yours :)
     
    Sasha likes this.
  6. SOC

    SOC Senior Member

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    @Sasha~
    Since he admits not knowing what immune treatments are available, I'm wondering if your ID specialist would be willing to do a phone consult with Dr Klimas to find out what kind of immune treatments have been useful to her patients. She's an immunologist and a researcher, after all. I bet Dr Klimas would be willing to talk to an interested doc.

    While it's quite possible that she couldn't recommend anything without having more immune tests, you never know. And the more education (and networking) your ID doc gets re: ME, the better for you, I would think.

    PS Congratulations on having a positive experience with an NHS doc. It shows things are moving.
     
  7. ukxmrv

    ukxmrv Senior Member

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    I don't think that this is necessarily a positive experience. It seems like in the UK we are treated so badly that even a whiff of being listened to and reasonable kind things feels good. However, it doesn't bring us forward in treating the disease.

    They may be saying good things in the pub but in the end what does it boil down to for us?

    It's a half full and half empty situation. From my side it's half empty because I've heard this all before and although I do meet the occasional NHS doctor like this (more recently a kind Gastroenterologist) it still means that we suffer these living deaths. I've seen these doctors come and go over the decades and lived through times it did feel like me make progress just to see the psychiatric lobby get more powerful again.

    They still won't prescribe the drugs that some of us find useful. I'd hate to be without Valtrex so buy it.

    The consultants in his group could be taking the evidence for treatment to NICE through their society as stakeholders and trying to change things to help us.

    It's an Infectious Disease Consultant's job to treat us. They used to treat us in the NHS with the first lot of immune modulators - Amantadine.

    However, they stopped doing this. The doctors changed and the NHS changed. Some of these doctors need to develop courage and ethics and a sense that they are being paid to treat the patient. My taxes pays for this system. On so many levels we are getting a bad deal and it's inaction by NHS doctors that is causing this.

    If the system is corrupt and for ME patients it is, then where does that leave the doctors? Shouldn't they be speaking out about corruption?

    I'm reminded of the great speech of the HIV/AIDS era "We are not crumbs and we are not going to accept crumbs"
     
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  8. rosie26

    rosie26 Senior Member

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    I like that ukxmrv "We are not crumbs and we are not going to accept crumbs" . x
     
  9. Sasha

    Sasha Fine, thank you

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    I can see that view - it was more than a 'whiff' but of course, I did come away without treatment.

    If I had strong evidence for a treatment that worked - an RCT - I'd take it with me and push really hard but I don't have that. Have I missed something?

    Interesting - I've never heard of that.

    I think it's a chicken and egg scenario. Very few of us are getting referrals to these specialists in immunology, infectious diseases and so on and they don't have any trial evidence that indicates a treatment so they don't try anything so they don't get any clinical experience to build on and so it goes.

    All the clinical experience is in the US and I've found UK doctors to be very dismissive of the many tests and treatments that the US doctors do. I think their perception is that US doctors order lots of tests and prescribe lots of treatments because it will make them more money. I think that's a ridiculous blanket assessment but I suspect that's what is going on in many UK doctors' heads. A friend of mine who moved to the US for a couple of years for treatment that she couldn't get in the UK of another medical condition met the same dismissive attitude.

    I was going to wait until the new Norwegian results are published, and write a letter to this consultant including the Haukeland studies and info about the UK trial for his interest and ask him why he and his colleagues don't themselves approach the DoH to ask them to fund more biomedical treatment.

    Good point and I agree!
     
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  10. ukxmrv

    ukxmrv Senior Member

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    I don't think that I have any papers that you haven't got Sasha.

    The insistence on a RCT before treating a patient is a new thing for the NHS and not one that we need to accept. That's what has changed.

    There were no RCT's on Amantadine in treating ME when they used it in the late 80's I was able to receive a range of "experimental treatments" from London NHS hospitals until the 1990's.

    There are no RCT's on the antidepressants that most of my GP's have tried to fob me off with.

    I don't agree that not many of us get referrals to Infectious Disease consultants. In my local group all the old ME patients had seen them at the same period of time that I had seen them. We all knew the same doctors. The problem is that these old doctors have died or retired. I attend a clinic under an Infectious Diseases consultant and know of another one who sees patients locally. The ME patients have stopped going to these clinics as the "new" version of an IFC (i.e. since the mid to late 1990's) won't prescribe anything useful.

    The chicken and egg situation is that as the new antivirals were invented the NHS stopped prescribing them and so they lost the experience that would keep them prescribing them. They had the old chickens but didn't buy any more as they died.....

    Complaining that there is no RCT to backup their lack of treatment is because they are not doing RCT's. If the current NHS docs won't treat ME patients because they are scared of NICE then they need to do something about it. They have societies and groups that they can work through to change things. As Stakeholders they have the power to comment.

    Thank you for persevering and it's a great idea to get them interested in clinical trials.
     
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  11. Sasha

    Sasha Fine, thank you

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    That's a very good point - I think there's also an additional question of what to do when the supporting evidence isn't an RCT but isn't a very good quality study either (for example, an open-label, single-arm study with subjective ratings of fatigue as an outcome measure). It's what to do in the absence of evidence and I discussed that with the consultant (who still didn't offer anything).

    Interesting - coincidentally I just read your post on another thread about being treated with Hum-something (Humovir?) and reacting badly to it. Yet I wish our doctors were experimenting because otherwise they won't learn.

    But these days, I wonder how many IFCs see us, certainly in comparison to the throughput of patients with other conditions. I wonder how many of us these days are bothering to get a referral.

    Totally agree about this - though I don't know that it's being scared of NICE, I think it's simply not knowing what to try - but I think they should be doing exactly as you say. I think that they should also be running their own prospective studies of groups of patients and reporting the results in the literature - for example, putting ten ME patients on Drug X, handing out Fitbits to get objective activity measures, and comparing before and after six months down the line.

    Thanks! If you ran the NHS and could get immunologists/IFCs trying things out, what things would you want them to try? What should we be asking for?
     
  12. taniaaust1

    taniaaust1 Senior Member

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    Thanks for sharing that, that is great to hear. :) . I wish we heard stuff like this more, it explains why you got treated so well there.

    Ive never got to see an infectious disease specialist (thou my ME started out viral like) in the 17 years since I've got the illness.
     
    Sasha likes this.
  13. maryb

    maryb iherb code TAK122

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    Interesting facts and views - our experiences are the reality of the non-treatment of ME in the UK.

    I wonder if part of the problem (a little maybe) is the situation with the 'compensation culture' even if a drug was shown to be useful - until its been approved by NICE would the consultants stick their necks out. Even Sarah My-hill won't prescibe long term a/virals. I think its hard to be independent thinking even at that level. but ukxmrv is right, why aren't they getting together and challenging what has become the 'norm' no treatment for ME.

    Everything is about risk nowadays. Its a shift that is so unhelpful for us.
    My vet years ago used to give me the odd jar, tube etc of stuff to try - not allowed to anymore.
     
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  14. Sasha

    Sasha Fine, thank you

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    Your VET?!!!

    It was especially weird reading that, considering your avatar pic...
     
  15. maryb

    maryb iherb code TAK122

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    haha
    Sasha
    I did mean for my dogs!! naughty..
    but you do know vets are allowed to treat people whereas MD's are not allowed to treat animals.
     
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  16. Sasha

    Sasha Fine, thank you

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    Phew!
     
  17. user9876

    user9876 Senior Member

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    I've noticed quite a few doctors in the UK who really don't like doing any sort of tests for many different things. Ignoring them there seems to be a underlying philosophy in the NHS that if a test doesn't guide treatment choices then it doesn't get done.
     
  18. user9876

    user9876 Senior Member

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    One thing I have noticed is that when hospitals treat people outside of their normal protocols they need to go to the health authority to get the additional funding. This creates a barrier for addional treatments and I've no idea how this has changed since the removal of health authorities.
     
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  19. user9876

    user9876 Senior Member

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    Its encouraging to hear about doctors being curious. I've always wondered why doctors aren't more interested in researching ME since its a challenging topic with no answers. Curiousity is needed and probably a way in is also required which is what the Rituximab work seems to give.
     
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  20. Firestormm

    Firestormm Guest

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    Depends a great deal on the 'treatment' you are thinking about, peeps.

    Sasha I too have had some recent pleasant encounters with consultants. One chap was a right boffin, he was doing my sleep study, and was really engaged and willing if not eager to dissect my 'data' on his terminal. Very refreshing - but then I provided plenty for him to be excited about apparently :)

    I think that's part of it isn't it? I mean if they can 'see' something that's a part of their remit then they will be more excited. So it could be hard data - or test results - or it could be new knowledge that we provide. Also on my Management course and subsequently, I have become quite engaged with one consultant. Getting into the nitty-gritty of outcome measures. Even to the point of tentatively helping with a possible research publication - though I know nothing of course :)

    I don't think anything can replace the feeling of - I don't know - 'Hope' I guess that I experienced when meeting Prof. Pinching for the first time after years in the wilderness. That visit served to wake me up! Funny isn't it? Doesn't matter if it's a consultant or a GP really, but that positive engagement and knowledge, or in my case a wake-up call to reality; can actually mean so very much. Even if it doesn't end with a prescription. Though of course we'd all like these encounters to end with a prescription for something that enables us to turn the corner but sometimes simple advice or engagement can help us do that too :)
     
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