Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

UK thoughts please

Discussion in 'General ME/CFS Discussion' started by Braveheart, Dec 29, 2016.

  1. Braveheart

    Braveheart

    Messages:
    19
    Likes:
    80
    South West England
    UK people , your advice please. Is it worth pursuing help within NHS? After loads of research both on this site and locally, I see there are m.e. clinics where it seems they mostly offer the CBT, pacing and graded exercise programmes. I don't see any positive posts about this. Is there anything offered that helps? Does physiotherapy help the sore muscles? Thank you ..
     
  2. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,909
    Likes:
    3,560
    Somewhere near Glasgow, Scotland
    No.

    A decent GP can help find drugs that may help your specific case, it takes experimentation and care to find right medicines and dosage for you, most folk with M.E. find they need lower dosages than typical, because we have heightened reactions against drugs (hence, alcohol tends to be a very bad thing for us as well).
    but all a doctor can do is help reduce some of the pain, etc.
    That's it.

    Graded exercise therapy and CBT for M.E. is as useful and safe as applying hot mustard and vinegar to haemorrhoids :p

    Sorry but that's the truth.
     
  3. Deepwater

    Deepwater Senior Member

    Messages:
    153
    Likes:
    798
    My experience has been that the physiotherapy being offered is not well targeted to help people with ME. I am fortunate in being able to pay for massages or private physio, but NHS physio for ME is like all their other treatments based on the belief that our problems are caused by lack of activity rather than vice versa.
    In my experience, at any rate, there is no massage for the sore muscles available on the NHS, and the exercises you are given are not targeted to the individual's needs. For instance, I enrolled on a core strengthening programme because of hypermobile joints, but found that all of us, no matter what our problems, were given the same exercises taught in a group, sitting in chairs (for the benefit of people who couldn't lie down, or because of lack of space in the little room, I don't know), and one exercise significantly twisted my hypermobile knees and ankles.

    The physio was very nice and very interested to learn from us about mito dysfunction in ME but couldn't get over the BPS babble she had been taught, so we were told that chronic pain is simply the brain over-reacting to nothing, and is not caused by, or warning of, injury. This is fine until one of the patients who is in chronic pain gets a sudden pain on doing a particular exercise (the same exercise that caused me problems, as it happens) - she is told it can't be doing her any harm because it is chronic pain (the underlying assumption is that one cannot experience chronic and acute pain) and she must ignore it. The lady in question was using a leg that had been smashed in an accident and was held together with metal plates!

    We also got lessons in mindfulness, which was not what I'd come all those miles for and was rather annoying as I have practised yoga since the age of 14 - which is a lot of years now. This seems to be disbelieved by the physio (evidently still full of the idea that we are in a hysterical state of mind), and I still had to pretend to be taught abdominal breathing. You could see how amazed she was when she put her hand on my tummy and found I was actually doing it right, just like I'd said I could. It wasn't what I'd come for - I wanted to learn how to help my joints stay in place, but that was just about the only thing not covered.

    Some of the exercises you may be given could be of some help if your general activity levels leave you a little to spare and you haven't been doing any exercises at all - I know there were others on the course less badly affected than myself who had stopped all exercise on becoming ill and did find the course helpful. In my case, I had continued, as far as able, stretching exercises that I have been doing since I was about 20, and these have helped with the pain associated with tightened muscles and lactic acid build-up. I find these much more helpful than the exercises I was taught by the NHS, which I'm afraid I have ditched. The over-exertion caused by attending the course also caused me a minor relapse, and I found that at the end of it I had been enrolled, without my consent, on to a GET programme, which of course I cancelled.

    I'm afraid there is no understanding of ME within the NHS, and all their treatments are based on a false model. I came away feeling the Core Stability title of the course had been a ruse by someone at the hospital to entice people with ME and fibro on to BPS-based treatment.

    Sorry, this is a major rant, but really, what a colossal waste of public money.

    My advice would be to do some gentle yoga at home and save your energy. Also, you might like to experiment for the sore muscles. I eventually discovered that the extreme tightness in mine was largely due to potassium problems. In ME it can have a problem getting taken up by the cells and a decent daily supplement can help. Other people find magnesium oil helps. You just have to see what works for you.
     
    MEMum, carer51, Hutan and 14 others like this.
  4. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,029
    Likes:
    15,896
    UK
    @Braveheart I think you live near me.

    The answer is simple: no.

    The clinic local to you considers ME to be a 'mental health condition'. I was told this on the phone by them.
    A patient with ME who is severe has been sectioned as severe illness is not recognised. I think one of the doctors (I have spoken to him about it) has a vague idea it may be a physical illness, but seems to know nothing about it.

    The main hospital believes it is a 'mental health condition'. (Told me by a doctor when I was taken in by ambulance a few months ago.) The doctor told me I would be treated with 'unkindness' if the consultant discovered I had been diagnosed with ME.

    A local GP who feared he had the illness himself told me that his colleagues regarded ME with even more contempt than they do people with depression. This is an exact quote.

    If you find a doctor who believes otherwise (and there is one whose wife , I suspect, has it) please let me know.

    Others have said they do know it is a serious physical illness, but they say that they dare not support people with ME as they fear that their colleagues will treat them as badly as they do their patients with ME.

    Please PM me if you want to know more.

    I think some are beginning to change their minds but they are afraid to speak up as yet.
     
    Last edited: Dec 30, 2016
    carer51, Hutan, Binkie4 and 16 others like this.
  5. hellytheelephant

    hellytheelephant Senior Member

    Messages:
    874
    Likes:
    4,509
    S W England
    Personally any activity of my muscles makes me considerably worse- even the smallest amount. In my experience the average physio will find it hard to get their head around the fact that exercise+ME= PEM

    The thing that has been the most helpful for me is learning to pace better....and ( it makes me sad to write this) accept my limitations.
     
  6. Molly98

    Molly98 Senior Member

    Messages:
    501
    Likes:
    4,287
    Hi @Braveheart,
    Same kind of experience as above I am afraid. Also from the South West and it seems to be either put yourself forward for abuse, hostility, disbelief, or keep a low profile avoid contact and suffer medical neglect instead.

    I am hoping that one day soon research will be conclusive enough that things are forced to change. No doubt the south-west will be the last place for change to reach though we are a bit in the sticks down here. Unless your further up such as Bristol area. Oh sorry that's Crawleys territory so probably the last die hard and stronghold when it comes to the BPS model. That won't go without a serious fight.
     
  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,227
    Likes:
    31,871
    As a UK physician I think I agree pretty much with Deepwater and Countrygirl. The answer is almost entirely no. There have been and still are a few NHS physicians who appear to take a wise approach, but they are very few and far between.

    But I think there are two different reasons for the no. One is simply that so far we do not have any treatments that work anyway - or not that look to me to have enough likelihood of working that I would want a member of my family to access them. It is not worth pursuing help from the NHS just because it is probably not worth pursuing help from anyone much. There may be a suggestion that in the UK ME patients are deprived of treatments that may be available elsewhere, or from private clinics, but I very much doubt it. If I were asked to set up an ME clinic I would take exactly the position I did when I started in a rheumatoid arthritis clinic in 1973 - admitting that we really had nothing specific to offer other than maybe being able to answer questions about concerns.

    The second reason for the no is very much as indicated by Deepwater. My colleagues treating ME/CFS in the NHS appear to almost all adhere to the view that even if you have no idea what to do you bullshit that you do and hire a lot of nannying therapists who have no idea of anything to intone the bullshit to the patients as if they were singing a lullaby to a nine month old baby. We had this with RA as well. Shortly before my interview for my consultant job a senior colleague took me aside and said that I would probably get the job but that there was some concern that I would upset the physics so to be diplomatic. Over the years I got to see how that approach permeated every nook and cranny of the profession.

    The only way out is to find out what the illness is, like we did for RA. After three or so years taking an interest in the research in ME I am still not sure I can see where the quantum leap will be. I am a sceptic, so by nature a bit of a pessimist, but in RA we made the quantum leaps without really realising at the time it was happening. So I became an optimist despite my pessimism. At the end of 2016 I am still prepared to say what I said at IiME two or three years ago - that the ME/CFS research community is on target for an RA-style quantum leap pretty soon. The last few years have not been wasted.
     
    MEMum, carer51, Barry53 and 36 others like this.
  8. starlighter

    starlighter

    Messages:
    19
    Likes:
    77
    UK
    Same as above and I am in the southwest. Rest, rest and more rest, good diet and quality supplements are your best bet to help support the body. If someone had told me to rest up when I was mildly affected rather than carrying on I would never have become bedbound. I've spent a few years since then going back uphill. Pacing is the key :)
    NHS is so poor with ME its a disgrace.
     
    TiredSam, Binkie4, FTY and 12 others like this.
  9. 2kidswithME

    2kidswithME

    Messages:
    63
    Likes:
    489
    Oxfordshire, England
    Hi @Braveheart, I'm in a different area so can't comment on local clinics. In my experience, with my children, a supportive GP can be really helpful. If you have one you are indeed blessed! If not, then I'd suggest that a local or nearby support group may have contacts or suggestions. MEA website has a list of groups, or just ask around.

    Mostly you'll need to self-manage as even the best, most understanding therapist, can't be on call 24/7. There are guidelines around about pacing, and probably threads about it on PR. But a helpful first step is keeping a diary (or use an activity tracker) to help you understand what issues affect you most, then look for ways to pace or reduce energy outlay in any way you find helpful (e.g. a perching stool for kitchen tasks). Good luck!
     
  10. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,133
    Likes:
    3,822
    Bristol
    I still hope that MEGA can be rescued, but this thread is an excellent example of why their sampling strategy to recruit from the CFS/ME centres would be unrepresentative. People who experience PEM are wary of the current regime and steer clear! Might it even be the case that most classic ME patients can't be found in the centres?!

    Learning about pacing is useful, and they did a diary where you colour in different levels of activity (e.g. Watching Sherlock is a different level than watching Countryfile). You can learn this online and spend fewer spoons in the process though. At the Bristol one they didn't suggest I do GET and I asked for CBT at one point but was dissuaded by them from doing that (there seemed to be a sense that I didn't require it but some people did, there was some sort of sub grouping i think). It was years ago so may well have changed.

    I had a severe relapse in 2012 and my GP commented that there was no point referring me back, they'd just go over things I already know.

    Has your GP done all the blood tests the centre would ask for? @Braveheart A lot of people are misdiagnosed. You may have something else and that could be treatable.

    What could be useful is checking for comorbid conditions which overlap.The NHS has been better for my POTS: expensive tests and ongoing meds. Not everyone is this fortunate with a POTS diagnosis, but for me it is treated as a biomedical condition.
     
  11. Deepwater

    Deepwater Senior Member

    Messages:
    153
    Likes:
    798
    Totally agree that exercise is not a treatment for ME, and any activity above the individual's tolerance will exacerbate their condition. But my own experience with certain gentle stretches that my body was already used to (and I think that is important) - particularly those that articulate the spine at various points and use gravity to do as much of the work as possible - is that they can and do help alleviate the pain. I am almost never well enough to attempt a full set at one go, and about half the time do not feel well enough to do any at all. When I can do a few I break them up, doing a couple after every bed rest. I'd rather forgo some other activity than drop these as the effect on pain levels and mobility is really noticeable.

    Of course it all depends on the individual case. If a person is severely affected, or in the early stages, then no exercise is safe, and I too wish I'd been able to stay in bed when I first became ill. But I do agree with Nancy Klimas that long term, for those of us past hope of a cure, there is a very, very difficult balance to be struck.

    I find it interesting that spinal manipulation helps me the way it does. Perhaps it works in a similar way to the Perrin Technique?
     
    Jan likes this.
  12. Braveheart

    Braveheart

    Messages:
    19
    Likes:
    80
    South West England
    Yes, I have had all the tests and was wondering if I should push for the referral as the GP tells me " The service is in very high demand." and my experience so far is that I have to push for everything which I find exhausting, demoralising and emotionally draining. I know you have all been there too.
     
  13. Braveheart

    Braveheart

    Messages:
    19
    Likes:
    80
    South West England
    Thank you everyone for your replies. I feel so sad and angry too, to know that you have all had such pathetic support. It now takes about 3 weeks to even get an apt with my GP and when I leave I am mostly in tears and exhausted from the half hour or more that I have had to wait in a room full of people, and then the actual appointment.

    I think you have helped me to see that I don't need that stress, particularly if the end result is worthless anyway. Thank you, I will keep going with some sort of gentle stretching as suggested, and let go of the physio idea.

    I can so without the bullshit nannying too, thank you for the tip Jonathan!

    It is such a help to have all your input.
     
    MEMum, MeSci, Hutan and 12 others like this.
  14. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    This is such an unusual situation for medical research. Lots of patients have a deep dislike and distrust of many of those who are conducting research, so will avoid them. How can that bias be mitigated?
     
    MEMum, Binkie4 and Invisible Woman like this.
  15. AndyPR

    AndyPR Senior Member

    We've got a number of threads on MEGA already, let's not derail this thread with talk about it.

    What I want to add to the conversation though @Braveheart is that you may encounter situations where not going down the UK "treatment" route could potentially be held against you. Anecdotally, I have seen reports of people being denied benefits and critical illness payouts due to their "refusal to seek treatment". Not knowing the details of your situation I don't know if this could apply and, frustratingly, there are also reports of it not being a problem, like many things in the UK, inconsistency seems to be the only consistent rule applied.
     
  16. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,812
    Something that can help a lot with the self-management is using a heart rate monitor. It's a great aid for pacing, and can contribute to avoiding crashes.
     
    MEMum, carer51, Braveheart and 3 others like this.
  17. loops

    loops

    Messages:
    29
    Likes:
    125
    I would concur with @Jenny TipsforME. If you have heart symptoms, dizziness, blood pressure issues, palpitations etc.......looking into POTS could be fruitful.....Having an official POTS diagnosis has helped me. There's a year's waiting list to see the specialist ( in London) But in the meantime I have been taken much more seriously.

    I had CBT at Kings in one of the NHS 'flagship' ME centres about 8 years ago. Wouldn't bother. At best it will make you angry. Also I took part in some of their rubbish research.

    Got to stop....it's making me angry now....
     
  18. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,133
    Likes:
    3,822
    Bristol
    A heart rate monitor with an activity tracker is much more useful than NHS advice (though it is mentioned in NICE guidelines so perhaps we should really have them provided!).

    It was actually how I discovered POTS, it was very obvious from the heart rate monitor.

    Most of us using this strategy aim to stay under 60% maximum heart rate (something like 110bpm) depending on your age. It helps prevent PEM.

    When I remember, I find trying to even out steps per day helps too. I subjectively do so little that my day to day activity appears the same, but when physical activity is measured I see a small boom and bust pattern.

    I use an Epson PS500 and previously used a Mio Fuse. The prices are coming down.
     
    MEMum, carer51, Snow Leopard and 4 others like this.
  19. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,238
    Likes:
    16,190
    As this is a regular query to the ME Association (MEA) information and support services, I have summarised three key points that should be considered:

    1 ME/CFS CLINICS:

    The MEA receives a large amount of feedback on the hospital based ME/CFS clinics. Whilst some people have negative experiences, especially when the service has adopted an inflexible approach to management involving CBT and GET, there are other NHS services that provide good quality pragmatic advice and information on key aspects of management.

    There is a full list of contact details for all the ME/CFS clinics in the UK on the MEA website:
    http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/

    The MEA website directory also contains a 'health warning' about CBT and GET

    If there is not a suitable service nearby, the Countess of Mar has established through a House of Lords PQ that you can be referred elsewhere to an NHS service/consultant of your choice:
    http://www.meassociation.org.uk/201...-their-own-choice-of-consultant-24-june-2014/

    If you want to obtain more information about the nearest NHS service you could post a message on the MEA Facebook page - where there are regular discussions on the pros and cons of individual clinics throughout the UK

    2 DIAGNOSIS:

    As many GPs still have insufficient knowledge, or lack the clinical judgement, on how to make a confident diagnosis of ME/CFS, any uncertainty about diagnosis should result in referral to a hospital based ME/CFS clinic (or a physician with an interest in ME/CFS)

    I know from over 30 years personal experience of seeing large numbers of people with possible ME/CFS, along with data from the hospital clinics, that there is a significant minority of people who are referred with a possible diagnosis of ME/CFS who turn out to have another explanation for their ME/CFS symptoms - some of which can be successfully treated

    The MEA guidance on key aspects of making and Early and Accurate Diagnosis can be downloaded from the MEA website:
    http://www.meassociation.org.uk/201...nals-that-could-improve-prognosis-9-may-2016/

    3 MANAGEMENT:

    As far as management is concerned, I believe there is actually quite a lot of advice, information and support that health professionals with the necessary expertise should be offering to their patients with ME/CFS - especially in relation to activity management/pacing, symptom relief for pain, sleep disturbance, orthostatic intolerance etc, benefits, employment, as well as explaining (based on current knowledge) why they feel so unwell.

    If a GP cannot provide this level of information and support, then there should be a hospital based service where it can be obtained

    You may find it helpful to look at my report on the 2016 ME Awareness Week meeting is Sussex on Research and Management that I did with Dr Amolak Bansal. MEA website report:
    http://www.meassociation.org.uk/201...ghlights-of-burgess-hill-meeting-14-may-2016/

    Finally, there are very few doctors in the private medical sector that we recommend in relation to ME/CFS and it's very easy to start spending large sums of money on investigations and treatments of no proven value. So 'going private' is not normally an option.

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  20. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,870
    After many years of boom and bust cycles (doing too much, relapsing, resting until I could drag myself up again, doing too much, relapsing...) my health has declined so much I'm housebound and spend most of my time resting in bed.

    I tell you this because I wish someone had been clearer with me many years ago about the detriment this cycle would be to my health.

    Over the last year I have 'steadied the ship' a bit by wearing a fitbit that measures steps (or rather wrist movements, since I wear it on my non-dominant wrist).

    When I started wearing it I was doing anything from 1000 to 3000 'steps' a day, and there was definitely a link between more active days and relapses.

    I now try to keep below 1500 'steps' a day, and am relapsing less often and my pain levels have become more manageable. Everyone is different. For some people 1500 wrist moves/steps would be impossible, others may manage significantly more. Keeping a symptom diary alongside a step diary helps sort out what is best for you. And you need to break up the activity into short spells with rests in between. That's where monitoring heart rate becomes useful.

    My New Year resolution is to get myself a heart rate monitor and try to steady that as well. At the moment I just take my pulse (finger on wrist) every now and then. My heart rate is going well above the recommended 60% (of 220 minus age in years) even after a bit of light activity around the house for 2 or 3 minutes. (I think the NICE guidelines say 70%).

    And I really want to try 'aggressive rest therapy' for a few weeks, though that's difficult because I'm a carer as well.

    The only 'help' I've had from the NHS was a group for fibromyalgia sufferers (I have lots of muscle pain with my ME, as do many others). The occupational therapist who ran it was convinced teaching us Pilates was the best thing since sliced bread.

    Unfortunately for me, it was worse than useless. If I tried to do any of the exercises in addition to my already overtaxed life looking after 2 teenagers as a single parent and teaching part time, I crashed really badly, and I simply didn't have the luxury at the time of dropping any of my normal activities. (I was too bloody minded to admit I needed to stop working until forced to).

    Most people with ME need to be told to rest more, not exercise more.

    Years later, when I became housebound I had a few visits from another OT from the local ME 'specialist' service. She was very nice and supportive, but had nothing to offer beyond what I already knew about pacing and relaxation. She made no mention of useful things like pedometers and heart rate monitors. At that time the so called 'specialist medical assessment' was done by a GP who supposedly took a 'special interest' in ME, but he was completely clueless.

    I'm grateful I have never been forced to do CBT or GET. If they are offered to you, remember that the NICE guidelines say that any treatment should be done in full consultation with and agreement with the patient. They should never try to force them on you.

    As @charles shepherd says, the MEA has lots of useful resources and advice.
     

See more popular forum discussions.

Share This Page