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Is the British treatment of 'CFS/ME' patients really worse than America?

Discussion in 'Action Alerts and Advocacy' started by DysautonomiaXMRV, Jun 7, 2010.

  1. Sean

    Sean Senior Member

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    I think that case went to the Queensland supreme court and they explicitly rejected the diagnosis of 'Munchausen's by proxy' (the excuse to remove the child), describing it as inherently unreliable, and in that jurisdiction at least it can no longer be used in medico-legal evidence.

    So, actually a win, all things considered. (Not that it should have ever happened in the first place.)

    The girl was returned to her mother. Been a while since I read up on that case. But I think there was a messy divorce between the parents that underlay the whole legal proceeding. Father did not agree with the way the child's health was being managed, or used it as a means to try to get custody, or something.
  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi Sean,

    I am very glad to hear it. Maybe the rejection by the courts helped stop the psychobabble in Australia, who knows? I just wish that families did not have to go through this, and that this didn't happen to adults, not just children, in the UK.

    I wasn't aware of the supreme court ruling.

    Bye
    Alex
  3. Tom

    Tom windows exterminator

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    What could happen next in the UK

    Very good thread starter Dys :thumbsup:

    Some selected things that make Britain Great.
    We kill an island with anthrax to see what happens.
    We take thousands of children and export them to Canada and Australia.
    We said sorry for that last year to the pissed off kids, this makes us Great.
    We invent mixi to control rabbits and export it, still killing in the wild.

    We have a new Government.
    The last time they were in power a cabinet minister almost force fed his son a beef burger on prime time TV at the hight of the BSE crisis to prove our beef was safe.
    The world banned exports of beef, and the herd was destroyed to kill off BSE.
    Humans still have vCJD.
    This was the government that locked up M.E papers for 70 years.
    CFS was invented and the shrinks rose to prominence.

    Already all claimants of incapacty benefit are being reassessed to reduce the numbers.
    This gets claimants onto Jobseekers allowance . if they don't take a job benefits get cut.

    The spin machine is cranking up, the defecit, the defecit , cuts cuts cuts .
    Cuts to come and taxes to rise, pick on easy targets first.

    NHS to offer three choices of treatment, for all .
    GET/CBT
    Harold Shipman Protocol
    Soon to be legalised assisted euthanasia.

    Massive savings here .
    No need to train therapists to offer something not fit for purpose.
    This will make masive reductions in health care costs for pensioners, There won't be any.
    Long term illness cured in seconds.
    It's your duty , do it for your country, your a drain on national resources.
    Think of the future generations,(we'll ship them to anthrax island to keep costs down and show our green credentials).

    Huge tax increases in VAT and fuel duty leads millions to take up a healthier lifestyle.
    Walk , or, GET on your bike.

    Numbers of visits to GP's drop to zero.
    Numbers of undertakers rise.

    Defecit fixed in two years and politicians award themselves a 200% wage increase.

    It's a Great Britain.

    Tom
  4. Michelle

    Michelle Decennial ME/CFS patient

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    The situation in the UK is indeed appalling. However I would note most of us here in the US also salivate when we hear people getting to see Dr Peterson or other ME/CFS specialists. They are usually paying out of pocket and those who do get it covered by insurance have what are called "Cadillac Plans." The vast majority of us who are not so lucky to have either the resources to pay out of pocket or a Cadillac Plan are left to a lottery of doctors who may or may not (usually not) know anything about ME/CFS. As there is no "standard of care" for ME/CFS, insurance companies will not pay for many of the tests we hear about in this forum. And if you are too ill to make it to a doctor's office, you go without health care.

    As for Dannybex's question about class and the UK medical system, I have pondered this one as well. My partner lives in the UK and complains a lot about the "public school boy" culture among doctors there. He doesn't have ME, but when I told him to talk to his doctor about about how he thrashes about at night and wakes up very groggy each day, his doctor literally laughed at him. The doctor told him, "if this was America I'd probably tell you to see a therapist, but you probably just need to keep a journal at night or something." That was six years ago and my partner hasn't been back since.

    I'm not sure I'd say it's a class thing but Dys did hit on this pervasive attitude of entitlement among physicians in the UK, along with, I would add, an almost totalitarian need to control public behavior. Consider this page on "Rights and Responsibilities of the Patient" at a UK health center (or centRE :Retro wink:). Notice every single bullet point is a "responsibility" without one single "right" of the patient mentioned. That really sums up the NHS. And God help you if you don't happen to be a "proper patient": if you're fat or smoke or have a poorly understood neuro-immune disease or anything that is going to take up time and/or jeopardize the GPs bonus that some management consultant (who knows nothing about medicine) decided would make the NHS work better.

    My own personal experience with the NHS was in the A & E. Both times it was stuff unrelated to ME -- a potential broken thumb and potential DVT (blood clot) -- and both times I received excellent care. As a Yank, the idea of being able to go to the hospital and not have to worry about how to pay for emergency care was such a novelty!

    I think the NHS simply standardizes its mistreatment of ME/CFS more than the US medical system. But the lack of standardization here doesn't mean we get better care. And in most places it seems to be a lottery. There are doctors who want to do right by their patients, but as neither of our governments have been inclined to do much research on the illness, they have little to offer their ME/CFS patients. Some physicians deal with that inability to treat us better than others. And then there are just plain dicks, of which I do think the NHS probably has a greater concentration.
  5. Sean

    Sean Senior Member

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  6. Dolphin

    Dolphin Senior Member

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    The UK & Dutch rehab model for CFS could spread to other countries-it has to Belgium

    Yes. This is something I have been worried about and I think people around the world should be thinking about/concerned about. For example in Belgium, 5 CFS specialists services were set up - they were all rehab clinics based on what is happening in the UK and the Netherlands. Even though an external report found they did very poorly, they are continuing. Once rehab clinics are set up for CFS, I think it is going to be hard to get rid of them.

    And although the sort of blanket CBT/GET clinics that happen in the UK may never happen in the US, the CDC has been eyeing up the UK system.

    The CDC CFS website has:
    It also links at http://www.cdc.gov/cfs/toolkit.htm to a factsheet from the hardline Barts clinic (see link in my sig) run by Peter White:
    The CDC's 5-year plan http://www.cdc.gov/cfs/cfs_strategic_plan.html includes:
    Given the sort of people the CDC CFS invite on their committess (Peter White, Gijs Bleijenberg, Andrew Lloyd, etc), the only consensus possible would be GET and CBT based on GET. Peter White walked out of the CMO group because it was including pacing along with GET and CBT (based on GET) and Gijs Bleijenberg would have similar strong views.

    Whether the CDC CFS program changes direction now that Bill Reeves has been moved will be interesting. James (Jim) Jones is still around.
  7. Dolphin

    Dolphin Senior Member

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    While people might think such cases would only apply to children, there have been cases where the authorities intervened with adults e.g. Sophia Mirza.

    But another way people can be coerced is through disability payments. More and more insurance companies are looking for people with ME/CFS to do GET and/or CBT based on GET as a condition of getting a payment and particularly before getting early retirement. This has spread a bit to Ireland. Also an insurance company can claim you didn't stick to the GET program - I've recently seen this in Ireland.

    This may spread to government benefit schemes. There is suggestions people in the UK with depression and other conditions would have to do treatment e.g. CBT to be allowed to continue to get benefits. This could spread to ME/CFS esp. if there is a network of centres offering such "treatments" - and lots of people around England are now in reach of them with the 50+ CFS centres.
  8. free at last

    free at last Senior Member

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    Most Doctors dont have a clue, years ago i mentioned ME to a doctor after a consultant i was seeing at Greenwich hospital Said to me, I think what you read in that book ( a book about ME ) is what you might have, said to the doctor the consultant said ME, He said sorry what ? i said ME, he said ME sorry whats that, I looked on a wall in the doctors office where it had something about ME on it ( might have been phone numbers i cant remember ) i pointed it out to him, and he seemed even more confused, like whats that doing in my surgery, like he had never seen it before.

    Anyway the consultant i saw at hospital ran a few tests, and saw me 3 times every 3 months then just didnt bother making a new appointment, even though i knew she could tell that what i was describing sounded seriouse. She just didnt know what else to do. So i became untreatable and now isolated.

    Even though i was describing flu like attacks with high ( at least 102 F if not occassionaly higher) i was sent to Kings college for more cortisol tests, ( a little theory they was playing with, ) then it was upstairs to see Mr Wessley, i sat in hes office describing high temperatures shivering one min burning hot the next, chest infection that felt like i had breathed Fibre glass dust stuck to my chest.

    Told him i would go pure white ( white green in the face ) found it hard to eat, or even drink water as i felt so ill. that my penis was even shrinking when these attacks were happening. That i was scared, that i would start crying because i knew what was coming for me when the attack started,

    often with the chest first, then the flu tempeture, aching all over headache nausea extreme lack of appetite ect.

    I thought he was listening, i thought he would order more tests, i thought he was my friend. Years later i found out who i was telling these private personal things too. Now i just feel anger, nothing else, anger, and pity on him for being such a piss poor medic Cheers Simon.

    I was sent to harold wood hospital after i learned it had a ME clinic of some sort. I thought now i will get some help. Two doctors listened to me, they looked at each other and mentioned something about cytokins, when i left, They booked a appointment for somekind of excercise program ( yeah you know ) I told the same story to another shrink they got me to see, who diagnosed CFS and told my GP in writing, CFS recovery within five years, but might have a Psychological explanation,

    I went back to the shrink, and felt let down, and told him so, he then became quite angry and said to me, I wrote on the letter CFS didnt i.

    One doctor i had was good. be he didnt have a clue what to do, though i could tell he knew i was ill, and not a fruit cake. I had hes respect, just not hes help. No one helped me, i got so scared now just left to get on with it, that i kept thinking its ok if i dont get better anymore after each attack, i can kill myself. that helped for a while knowing i didnt have to die, weak trembling, burning hot, and just plain panicky untill death.

    Slowly i got better after years of helping myself, with amazing healing foods ( many types of salad veg, fish )
    vit pills, magnesium tablets hi strength vit c tablets, evening primrose. I just clawed my way through the years, with relaspe remission relapse remission, on and on. I did get better after years of better sleep that a side effect of amtriptylene gave me, knocked me out for hours ( great ill take that side effect ) as by now i was on 4 hours sleep every 48 hours,

    Contary to what people might think, anti deppressents didnt stop the crashes, they continued for years. But the sleep enhancement may have saved my life. As untill then the panic by now was just suffocating, i was verging on extremly traumatized. My heart always racing through little sleep, anxiety, And the ME symptoms. I will never fully mentally recover from this Ordeal, In the winter months i lock myself away and never go out, incase i catch flu. Pettrified of illness after that life.

    Doing so much better now. but still get relapses at varying time scales and durations now. But weaker than those dark days.

    Yes i feel abandoned and let down by my country. its just plain wrong. but im lucky. look at poor lynn Gilderdale, my heart crys for her. But i didnt even know her. But her suffering and fear i might have tasted a little. rest in peace lynn, your country and doctors have nothing but shame on them. RULE BRITANNIA bollocks
  9. ukme

    ukme Senior Member

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    Thanks Dys, a very powerful piece of writing. It was abit tough for me to read tbh. The truth in this is best avoided so you can get through the day and keep positive.
    It breaks my heart to take my daughter to the GP and I try to avoid where possible. I wish we could just have a place where we could pay for tests we want and not have to keep going cap in hand to ask for things and be seen as nutcases into the bargain. I wish I didn't have to be an unqualified doctor for my daughter. I wish more than anything that we had a proper ME Specialist to go see, even if it was private, to do all the tests and try and help us.
  10. Mithriel

    Mithriel Senior Member

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    Scotland
    Dannybex wrote
    They are trained to be arrogant. I think it started as having confidence in your own judgement but it has crossed a line. It doesn't happen to them all, some of the cleverest doctors I know are the most caring, but as usual it is the lazy, the uncaring and the least clever who use arrogance and position to hide their personal defects. It happens with nursing staff as well.

    It is not confined to ME, it is a problem throughout. ME/CFS just gives nasty doctors a chance to be nasty :Retro smile: My friends with MS feel they are not treated with respect. In particular, the disabled do not fit into hospital routine and can be treated appallingly. A friend with MS, with no feeling below the waist, had a serious bladder operation. There was no suggestion she was exaggerating or putting it on as she was not on any post operative painkillers. She was put into her wheelchair at 7 in the morning and when she asked to be helped back into bed at six in the evening they were very uncaring and annoyed that she wanted to go to bed before a decent bed time.

    I also had a friend with cancer and I was shocked at her treatment. Cancer is seen as an illness with massive resources and compassionate treatment.

    She developed a severe radiation enteritis and was put on a drip by her consultant. The weekend doctor who took over decided she had a tummy bug and discharged her. When she refused to go home (she had cerebral palsy and could barely walk at the best of times) because she could hardly lift her head off the pillow the nurses ignored her and treated her with disdain as a troublemaker. The consultant hit the roof and said she could have died so she put in an official complaint and the ward procedures have been changed.

    Our position is worse but not different.

    (I must add that there are some very good doctors, compassionate, knowledgeable and sympathetic but their hands are tied by the flawed research and official guidelines)

    Mithriel
  11. mermaid

    mermaid Senior Member

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    It doesn't help that the whole model of doctoring has changed since I was a child where the doctor at least tried to build a relationship of trust (I am 58). Our GP came out to the house when I was severely ill with pnuemonia and glandualar fever. Almost unbelievably if my mum had not promised to nurse me carefully herself when I had glandular fever age 13, I would have been sent off to the local isolation hospital!! (sounds like the Dark Ages).

    However my view of GPs has gone steadily downhill over the years ... not just in their inability to support those with ME/CFS but in their seeming inability to identify and support a whole range of illnesses/conditions. Starting with my child who even though he had been diagnosed officially with Tourette Syndrome (eventually by the leading expert in the country), I was told patronisingly by the GP (I was actually only there for his verucca!) that he would "grow out of it". He didn't.

    I learnt eventually to do my own research, first with books, and now with the internet. Different GPs same problem ... they just didn't seem to know anything! I thought I might have an underactive thyroid ... asked the GP to do a blood test - refused ... could not possibly be that. I changed GP, and he ran tests and it was borderline and mercifully gave me thyroxine which I have taken since.

    I then went to the new GP with a gynae problem which I had tentatively identified on the internet. He examined me ... no was almost sure I was wrong but thankfully sent me off to the expert who agreed with me and operated.

    The latest one was when I lost the sight in one eye last year. I went to the optomotrist of course not the GP first, and he identifiied a macular hole. I was shocked that my GP had not even heard of it (I didn't expect her to necessarily know all the details but it wasn't that rare apparently). That was one example of the NHS at their best as I had a superb surgeon who operated on it with an operation that did not exist 20 years ago, to restore the sight.

    I go to my current GP with ME/CFS issues as rarely as possible. She was slow to refer me in the first place and it was only when I persisted that she referred me to an ME/cFS clinic. Of course they do little more than a diagnosis, but if I go to my GP she is nervous to say anything whatever about ME but thinks that the "expert" is doing it all! Recently I saw her and protested about NHS attitudes and she just said .. well of course we are used to doing tests and finding something and referring on.

    At least my GP is willing to recognise that I do have a separate condition now called ME. I have heard some shocking stories of people iller than me whose condition is just not acknowledged as a separate condition at all.

    Incidentally my GP has this mission statement which at least shows they are trying:
    Our Mission Statement:

    "Patients are the most important visitors to our surgery.
    They are not an interruption to our work.
    They are the purpose of it.
    They are not an outsider to our surgery.
    They are part of it.
    We are not doing them a favour by treating them.
    They are doing us a favour by giving us the opportunity to do so."

    (Adaptation of a quote by Mahatma Gandhi)
  12. Sing

    Sing Senior Member

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    Mithriel, your post on how patients with other kinds of disabling illnesses are treated in the UK, how they are often treated in appalling ways too, makes me want to mention maybe the best book I have ever read. It is about the treatment of children with cerebral palsy in Britain and it is called, Skallagrig, by William Horwood. It is so exactly like what many of you in the UK are writing about here, and what we in other countries experience too, in somewhat less extreme forms. Still, the picture is still the same.

    I don't know if it is class snobbery at the root but perhaps social control and the tendency to blame those who can't conform to the desired "picture". Somehow we are a threat to the belief system, which must go like this: Anyone who tries, and acts responsibly, can function well within society, and if you can't it is your fault. The remedy is ever increasing doses of social control verging into sadism, for those whose behavior demonstrates a lack of social conformity. Of course it is the ill who are most subject to this because we can't effectively object or retaliate. The workings of a beaureacratic system have a lot to do with how social control, blame and cruelty become amplified as things progress or go down the line of control. What starts out small becomes nastier as the logic and politics of social control go on.

    Hope it is okay to add these "wide-ranging" thoughts to this intense and so important thread.

    Sing
  13. jace

    jace Off the fence

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    Rharrgghh Dysautomania, not, quite, right.


    No. We have in the UK a flourishing private medical system, which because of competition from the NHS is probably cheaper than that in the US. Ever heard of Harley Street? The recent Daily Mail article shows that the tide is turning here, just as it is worldwide. It is looking increasing foolish to subscribe to the psychosocial theory of causation.

    Even within the NHS there are pearls, GP's who have understood myalgic encephalomylitis, and do what they can, bend the rules, to help. The trick is, to find them, and the way forward is local ME groups and individuals with ME.

    And in a life-threatening situation, the NHS gives world class treatment. Scandinavia, Canada, Cuba, and poor old Blighty also have a lower new-born and maternal death rate than the United States.
    source- nationmaster.com (US infant mortality rates not provided)
    Wikipedia

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