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Private UK Consultants not using the psycho-social model recommendations

Discussion in 'ME/CFS Doctors' started by batstork, Aug 20, 2019.

  1. batstork

    batstork New Member

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    Hey there, I'm looking for recommendations for consultants that can be seen privately in the UK who are not subscribed to the psycho-social model. Those who don't just offer GET and CBT, and who offer medical responses.

    By scouring these forums so far I have identified:

    Dr. William Weir (although I can't find a website for him)
    Dr. Simon Ellis
    Dr. Paul Worthley (M.E. Trust)
    Dr. Amolak Bansal
    Dr. Basant Puri (Breakspear Trust)

    Any info on what to expect from them from people who have seen them would be great.
    Also, are there any other organisations or Doctors I should add?

    Cheers in advance :)
     
    Sarah94, JaneL, Louie41 and 6 others like this.
  2. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I’ve spoken to dr Bansal on the nhs, on the phone. To be honest I didn’t have the best experience with him, I believe this is because it was on the NHS. I was severely ill at the time, having been through a CBT trial. The process for going to st Helier clinic is they send you some questionnaires which asked biopsychosocial questions, the sort of things I was asked during my CBT trial. And in his write up letter, he wrote about my sleeping problems, and anxiety that were causing a lot of my issues. (Not true). This letter was unhelpful for me and I have never given it to anyone including the DWP as in my opinion it makes out my condition is mostly psychological.

    He recommended I should have a physio come to my house but at the time was so ill I knew physio would make it worse so I told my GP that. Also said he would send me a list of some supplements to take but I never received the list, but think it’s a few different things like B12 riboflavin. He did write in the letter that my lupus consultant could look into ritixumab but that never happened as my lupus is too mild anyway.

    He also wrote that it’s important for me “feel in charge” of my illness as that’s important.

    Then I was discharged as I was too unwell to travel. I think he was constrained by the NHS but still found it not a good experience.

    I have heard if you see him privately however he prescribes Aciclovir and B12 injections. I never saw him privately and it seems like his private practise is very different to his nhs one, as my local nurse went to see him and reported very different experiences.

    Re Breakspear, I saw someone else at Breakspear not dr puri. I personally did not have the best experience at Breakspear and saw some questionable things in my time there although also did see some people make improvements. I’m getting exhausted now but will try to reply soon about it.
     
  3. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Re Paul Worthley, I have only heard very good things about him and that he’s very supportive and kind. He’s helped a few people I know. I tried to get an appointment with him recently but he doesn’t do phone appointments anymore, only clinic visits :( I would be grateful if anyone who has seen him can comment and say what kind of advice he gives.

    ——-

    Re Breakspear. I really don’t know where to start with this. My honest opinion is there is a lot of questionable things going on in that place as well as a lot of quackery. Some of the medicines they prescribe are perfectly fine medicines that others prescribe which are helpful (like LDN, anti virals), however they are also big on Lyme treatment. I am not entirely sure as to if their Lyme is a valid test or valid diagnosis and do not know enough to comment except one of my tests was negative one positive and still they dxd me with Lyme and then said I should have IVs of an antibiotic which is usually used as a last resort antibiotic. I didn’t do it as the test I did is one that cross reacts with autoimmune antibodies yet the dr didn’t mention that when it came out positive, I was very uneasy about the whole thing. They say some of the symptoms related to M.E, are instead caused by infections like babesia.

    I had high levels of some viruses in my tests and so started antivirals. Essentially to cut a long story short, I started trying IV treatment instead of tablets - made me increasingly unwell as travelling made me so sick and I ended up back at home not being able to do anything.

    I spent a lot of money on supplements and allergy testing and blood tests.

    The blood tests cover Lyme disease, co infections, active viruses, toxic chemicals in urine, nutritional deficiencies, myhills test, histamine etc. It’s called an “environmental illnesses” approach. Some of the tests are at labs that I find questionable because they both make tests as well as sell supplements as a result of the test results. Breakspear is also very big on supplements.

    treatments they give are anti virals, antibiotics, high dose vitamins, supplements (they are huge on supplements), diet advice, psychology. Treatments include courses of IVs, I know someone who would spend £20,000 every 2-3 months on long courses of IV treatment. Each IV costs like £120. So even if you do one a day, for 4 weeks - you’ve already spent £2000.

    This is what I’ve observed. They are pushing treatments on patients that are sometimes questionable at best and really dangerous at worst. I’ve seen people who’s veins have collapsed due to having so many IVs so they ask them to put ports into their ankles or their chest.

    They also have a weird thing about toxicity in the body and detoxification and recommend many supplements for it.

    When I had a bad reaction to an Iv with high dose B vitamins, they didn’t seem concerned at all and said I was having a “herx reaction”. Anything that went badly, or people felt a bit more ill, was called a herx reaction. Again that made me uneasy. I had an extreme reaction actually to the B vitamins to the point my mum was on the verge of going to A&E with me and calling an ambulance after the clinic that day.

    I have however seen people make improvements. However when I listened to those patients stories, it seems to me that

    *one of the patients who had a remarkable improvement had a very severe viral infection, when given antivirals was then able to make a dramatic improvement within weeks from being completely bedbound at 0% functioning to quite high functioning. It was due to the anti virals but they still continued to go to Breakspear and get lots and lots of other treatment including Lyme and high dose vitamins. Perhaps it helped I don’t know but certainly the dramatic improvement was from anti virals.

    *one person says they’ve improved due to Breakspear but also says the biggest improvement was after they were given PoTS medication outside of Breakspear

    *another also says they have Lyme but actually had most improvement after antivirals

    *other people used “natural protocols” like supplements

    *I think some may have improved naturally anyway

    *it seems to me that it’s just a few drugs that help people like anti virals or LDN. However I think in order to keep people in their clinic they do lots of other things like the IVs, nutritional supplements and high dose IVs which I’m not sure about.

    *they ignore PoTS even when you do have it

    *they do something called low dose immunotherapy. People swear by it. I do not know enough science to say whether it works or not but it’s essentially putting a tiny bit of a substance you’re intolerant to eg chicken diluted in water and you have a bit of that every day. So that when you next eat the chicken that day you won’t get reactions. But the thing is you need to continue with the LDN for a long time or even forever. It’s not really like normal allergy desensitisation. Also it costs a lot of money for testing (think like close to £400 (edit: sorry it’s actually £240) for a day of testing which might test a few foods). And then you pay for the “vaccines”.

    They also can ask you to do an autonomic test (I think they push it quite heavily) it costs close to £800 and then they don’t even interpret the findings. Mine had so many things wrong with me in terms of heart rate and blood pressure but then I spent another £300 to speak to the person to interpret it and they said “look out the window and try to find some happiness” Yes really!

    My advice is to not go there. I’m sorry to say. I do understand people go for Lyme and that’s totally their right to do so. I just had a very uneasy feeling about that place. I actually went there as I wanted to try anti virals but unfortunately I became too ill to even try it properly.

    But the whole place made me feel uneasy.

    Like I said, I know people who have improved a lot. I’m just unsure as to whether they could have got the same affect by visiting another doctor who will prescribe some meds without all the added and potentially questionable stuff they do. The amount of money as well that all of this costs is unbelievable.

    I am hoping to see another doctor to try the medicines I never got a chance to try properly - I think other doctors on your list prescribe some of them like anti virals LDN etc.

    Edit: they also have a heat chamber thing. I forgot what it’s called. It’s supposed to help you sweat out the toxins. I never tried it as I was far too ill and anyway one of my main symptoms is feeling too hot/sweating episodes etc.
    Edit 2: sorry you mentioned Dr Puri. I know of people who did see him. He had a special interest in Lyme, I heard, and it was very difficult to get an apt with him at the time. I think he treats along the same lines as the rest of the consultants.
     
    Last edited: Aug 21, 2019
    Squeezy, batstork, Annamaria and 9 others like this.
  4. ringding

    ringding Senior Member (Voting Rights)

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    I saw Dr Weir earlier this month. He's a very friendly/supportive man who listened intently. I believe that he has suggested treatments for some people where it may be of some help, but for me he didn't suggest anything new (which implies to me he is genuinely assessing each individual). He reinforced the elements of self care that I'm already undertaking. If you need an advocate I think he would be an excellent person to approach as he will write to your GP explaining that it is a biological issue and he has assisted people with insurance claims in the past (from Googling).
    You don't say where you are, I saw him at a locally arranged clinic in Exeter (which was a bit of a trek from Bristol) but it was a better option than going to see him in London. It was arranged through a lady on the ME Action SW Facebook Group. I believe she still has appointment slots for a September clinic, I can PM you her details if you'd like.
     
  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Dr Worthley is really lovely. Sometimes the ME Trust advertises that Dr W has telephone availability again, but it's sporadic.
     
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  6. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I’ve been told they have a new GP joining at some point as well.
     
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  7. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Last edited: Aug 30, 2019
  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    The ME Trust is a Christian organisation, so they're liable to talking about 'spiritual' stuff. As an agnostic Buddhist who went to a CofE primary school and a Catholic sixth form, I'm possibly more used to filtering that out.

    They did take Jessica Bearman-Taylor as an in-patient, and she found it useful. But that doesn't mean anyone else will find them useful.

    My main experience with them was that Dr Worthley suggested I use oral rehydration solution for OI, which helped at the time, and offered to write a letter if I needed it for PIP. In the end, he didn't need to, but it took the awful worry out of that process.
     
  9. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    There is also Dr Nigel Speight, who sees children.
     
  10. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    I'm actually a Christian myself, lol, but I don't take kindly to receiving unsolicited spiritual chat from a medical professional lol.
     
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  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The revived thread on an article by Dr Worthley may be relevant.
     
  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Which is absolutely fair enough, and I think it's the sort of thing that will put many people off, so it's worth people knowing upfront.
     
  13. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Re the Breakspear Clinic post above, I'll just stick my head above the parapet to say that I'm a patient there and mention my own experiences. I knew the clinic was considered 'woo'-y by skeptics, but I was getting nowhere with the NHS in trying to get diagnosis/treatment for probable Lyme Disease (I'd had the characteristic 'bullseye' bite). As I went through eight years of scarier and scarier symptoms, the NHS's response ranged from at first 'Lyme Disease doesn't exist' to 'Lyme Disease doesn't exist in this country' to 'Lyme Disease maybe exists' at which point I was given an ELISA blood test, which came out negative as they always do unless you have been recently bitten, not years ago. In despair, I asked around and Breakspear, and one specific doctor, was recommended by more than one person.

    I went to see that doctor, and got a clinical Lyme diagnosis based on symptoms and history plus an 'indeterminate' Western Blot test (an infection is present but may or may not be Lyme). I was treated with the Lyme-appropriate antibiotics and improved dramatically. The Lyme had reactivated my ME, which I'd had in the 1980s and recovered in 1990 for 15 years until the Lyme bite happened, so the treatment for Lyme was a huge success but I hit a plateau of not improving further. ME symptoms remained, but were now thankfully moderate instead of severe. So I agreed to try a couple of things mentioned in the post above, the autonomic test and low-dose immunotherapy.

    The autonomic test was £500, not £800. Upon my declining it due to £500 being unaffordable for me (I've found all staff sympathetic to my financial hardship), I was offered an alternative less-detailed version at £250. The doctor who administered the test (consisting of being hooked up via electrodes to a computer system monitoring various bodily functions in real-time for an hour) discussed with me what he was seeing and we had a truly interesting chat. He sent the results to my consultant, who discussed them with me. I wasn't left hanging with no results (nor told to 'look out the window and try to find some happiness' or anything similarly silly!).

    Re low-dose immunotherapy: not sure about it but I suffer many food and chemical intolerances and decided to try. Testing costs £250 per day, not £400. You can do it in half-days at £125, which I did as I'm too unwell to cope with a full day of anything. A patient sitting next to me told me she'd had severe ME but was now mostly recovered, and had been doing immunotherapy for about 18 months. Interestingly, she said she had at first been referred to Trudie Chalder for diagnosis and treatment when she acquired ME, but got no better under her (surprise, surprise!). She said that really all Chalder had done was to make her fill in journals of her daily activities, but upon handing them in, Chalder just basically threw them away without looking at them. At that point, the patient decided to try to find help elsewhere! In any case, I've been on the immunotherapy for about 2 weeks now, will see how it goes...

    Possibly one's experience may vary depending on who you see; I can only speak to my own experience. My consultant has been 100% professional in approach and we have a good relationship. I've had numerous blood tests there but never from a lab that sells supplements. My doc does recommend some supplements, particularly for various minerals, but I am clear that I'll only take them if there's an identifiable deficiency; I requested a blood test for mineral levels and it showed marked zinc deficiency, which an NHS blood test had also picked up in the past, so am now on a zinc supplement. Re their not diagnosing POTS, my doc did diagnose me with that after I supplied a printout from a pulse monitor I have at home, which showed my heart rate going from 70 when waking up in the morning, to 135 and staying there, upon standing up. I've never been offered IV treatment, antivirals, or anything uncomfortably woo-y. I'm enormously grateful for how dramatically I improved thanks to them, and dread to think how sick I'd be now thanks to being just left to it by the NHS. But as mentioned, YMMV.
     
  14. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I’m glad you had a good experience.. but my test that I did, did cost £760. That includes the initial consultation of £200 which I was told I had to have, before I could have the test.

    Sorry you are right on the allergy testing being £240 a day. I used to pay for 2 days at a time though looking through my old invoices, and I’ve edited my original post.
     

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    Last edited: Aug 21, 2019
  15. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    What would you like from a doctor @batstork?

    I've seen or spoken to a few of these doctors and they all have different things to offer.

    As an example if you want a report written for DWP or a legal case I'd try Dr Weir as he has a lot of experience

    or do you want to try an experimental treatment or have a particular test. I may make a difference.
     
  16. batstork

    batstork New Member

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    Thank you so much for the detailed response. It does not surprise me in the slightest that this made you uneasy - it rings of the new brand of pseudo-science out there - 'We'll do all these complex tests that may or may not have actual value but which fit our predetermined package and charge you through the roof for a solution we make/market'

    I think I'll give that a very wide birth as I would not understand enough of the science to know when something was dodgy. We're an easy community to prey upon.

    I'll look into seeing Paul Worthley - cheers!
     
  17. batstork

    batstork New Member

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    Brilliant, I've made an appointment with him, I'm not far out of London so getting to see him isn't too much of an issue. Thank you for your response :)
     

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