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UK: is it true the NHS secretly banned follow up MRI/SPECT scans for ME patients?

Discussion in 'General ME/CFS News' started by SilverbladeTE, Jan 17, 2011.

  1. I've heard this before several times, but wonder if it's true?

    from my own experiences, I suspect it is.

    i had MRI scan after getting worse, and testosterone levels fell to zero.
    Showed, according to the consultant, extremely large amout of lesions on the brain that were typical of ME patients (according to him) and slight malformation of the pituitary
    So I get yearly checks ups for the testoserone, but, despite the consultant wanting to do follow MRI and SPECT scans...nothing came about

    on asking my (new) GP recently, she basically laughed in my face and said those lesions could have come form anything and why would they do follow up MRI scans and ME is psychosomatic anyway...
    omg I am sooooooooooo sick of the medical "profession". meh.

    Um, why do follow up MRI? because my pituitary gland is screwing up, not triggering testosterone production, and it's a NEUROLOGICAL DISEASE?

    shouldn't it be sane common practice to do yearly MRI scans on us?
    or is that veroboten because
    a) it would prove there's actual brain damage etc going on
    b) cost too much
  2. rlc

    rlc Senior Member

    Hi SilverbladeTE sorry your having to put up with this total crap from your doctors, the only advice i can give you is this, take this list to your doctor which proves that your zero testosterone and malformation of your pituitary can only be caused by some form of pituitary tumour and demand that your doctor sends you to an endochrinologist, then tell the endo about the brain lesions and demand they investigate it.

    If your doctor won't refer you, make it very clear to them, that when you get another doctor to investigate your condition, if they find out your problems are related to these test results that your doctors refusing to take seriously, your going to sue their arse of, and if you die from any of the conditions these tests indicate, you've instructed your family to sue the arse of them! You can sue for millions in the UK! You can also report doctors to higher authorities for failling to investigate failed test, their not above the law.

    Have any of these dim wits run the other tests related to low testosterone found here

    All the best mate, treaten them with legal action and sack anyone that gets in your way, you have failed major test results and you have the legal and moral right to have these investigated and be treated like a human being!!!!!
  3. Enid

    Enid Senior Member

    All too familiar here too. I was denied any more viral testing at my annual hypothyroid blood test for correct dosage. Your new Doctor's scepticism is also very familiar unfortunately - not long ago following a second collapse and carried to A&E three young (obviously recently qualified) set a psychiatrist on me. So all in the mind still persists in their education. But fight on - you know more than they.
  4. Francelle

    Francelle Senior Member

    Victoria, Australia
    SilverbladeTE, I despair when I read this type of thing! The systematic sabotage of M.E. patients is nothing short of evil. I know I’m not telling you guys anything about the extent of this perversion, but at least we can support each other.

    Ooooh I get so angry......guess I better close off now before I!
  5. RLC
    alas, you don't know how the doctors work here I'd guess, lol
    it's 100% about *them*, sigh.

    Not all docs are rotten gits, but from experience only about 1/3rd are any good

    In past 16 years only had one GP who was helpful and decent and he left the area cause of the nitwits in his practice and the local scumbags
    His folks, I believe, originally came form Iran or Jordan, nicest guy you could meet, best diagnostician, too, they even filmed him he was that good...but I know he got abuse from lowlifes (I heard it, ugh) , and suspect such as well from his fellow practitioners though with them, less about race and religion perhaps, and more about the fact he took time and care over his patients and had much higher rates of refferals and successful treatments. Such a shame, brilliant doctor

    Doctors police themselves here in the UK, they can get away with about anything, hence the world's two biggest mass murderers were both English GPs, most have heard of Harold Shipman, few have heard of John Bodkin Adams though

    Some of my experiences, and reasons why I loathe "medical profession" (as a system/group that's pure "Victoriana", not the individuals. The BMA sucks!):

    I look after my mum, though now, more a case of looking after each other hehe:p
    So I used to push her about in her wheelchair when she needed to go outside.
    My mum was a nurse, long time ago, patient fell, grabbed her by the neck...and broke her back, causing partial paralysis and then severe scarring on the spinal cord from a flourescent X Ray dye they used ot use, now she has COPD and arthritis as well.

    so I wheeled her in to see this consultant, my Mum's a damn gutsy, humorous smart old lady, fyi, she ain't no whinger or suffers fools gladly but she is very loving and compassionate as heck, she'd give you her eye teeth if ye were in need.
    First civilian female to pass the Strathclyde Police driving test, and she did it in a hand-controlled car!
    She had written to his same consultant about my issues and he'd helped with the testosterone...note that, senior consultant doing various fields, he's not a specialist. But he is a very...odd fellow, skilled but...well..."odd". I'm used to dealing with "odd" folks, lol, long as they ain't gits or stupid, who cares.

    So, this consultant, kind of laughingly wheels my mum up against the wall and says with a smile "That's how women should be treated!" thinking it was some kind of joke...

    If I had been fit I'd have flattened him on the spot. ME + wheeling mum in = I was sick as a dog as you can imagine. And I was mostly gobsmacked, how the hell could a doctor be so vilely ignorant?
    I quickly wheeled my mum back out after the most desultry examination by this ratbag and shook his hand...because we were even.
    He'd helped with the testosterone issue, and thus far as I was concerned, saved my life. Now,we were quits, I won't flatten him but it's "tabula rasa" again. I'm kind of old fashioned about honour. Violence is ugly and despicable, but some folk need a kick in the pants, sigh

    Mum naturally complained to the hospital about his mad behaviour...and nothing came of it, even with me as witness.
    This is par for the course because with the profession, it's ALL about appearances, and their precious reputation, as it always is with all organizations, see US government vs Assange and the Vatican vs the molested kids etc
    always ALWAYS the same, organizations put their reputation over everything, their ethos, morals none of it matters.

    So in UK if a doctor is caught having sex with a patient, WHAM! down on him like a ton of bricks. Or if he exposes corruption and dangerous practices where money is being made (Wakefield for example, and note how the UK's equivalent of the FDA for drugs, was paid DIRECTLY by the pharma corps!! yeesh)
    But otherwise, they can get away with murder, literally, long as it doesn't look too bad they "scratch each others backs". See Shipman and Bodkin Adams.

    Another of the many such things to happen to me and mine:

    I've put on a lot of weight since I got ME, I can't do much exercise, but haven't lost my appetite thankfully, I'd rather be fat than feel nausious/seriously underweight like many do (testosterone injections helped a lot, also increased appetite and stopped the terrible violent "dry heaves" I'd get at random, ugh hated those, trying not to puke over your Mum as you wheel her into the doctors is not not fun)

    So doc says I need ot lose weight, fair enough, but as I tried to explain to him, it's not that damn easy when you've got ME. I used ot do weight training, martial arts and very long walks all the time, I can't do that now. He says it's just a matter of lowering calorie intake "There were no fat folk in Belsen!"

    he actually said that. He also said afterwards "Oops! I shouldn't have said that, another doc got in trouble for it" Oh, no bloody kidding, Sherlock, WTH do you expect?!
    Now, he's a darkly humorous guy, I love dark and ironic humour myself at times, but not when I'm sick, looking for help. I don't think the guy is an anti-Semite, but it shows the level of behaviour/thinking that goes on in their practice.

    Since my great Uncle was one of the guys who was in the unit that liberated that concentration camp, and I knew and loved him, and saw what those experiences had done to him...I was not at all happy.
    I pointed out, later to that idiot GP, that there was ineed, at least one fat person in that concentration camp, she was a Jewish doctor the SS scum left alive to treat the folk in the camp. that poor lady survived, but must have suffered dreadfully.

    and other stuff docs have dine, including first two GPs I saw about my ME did *nothing* for me and I found out later they'd publicly said they didn't believe ME was real

    and some of the stupid/wicked stuff my Mum saw as a nurse back in the gods. She went ballistic on another nurse who had BLOWN down an intravenous tube to "clean it" and then left bubbles in it, and this...moron...was sitting there watching the bubbles go down the line, the patient paralyzed unable to shout for help, watching the bubbles get closer and closer...
    So mum took off the line and yelled at the idiot if she was having fun re-creating the nazi's experiments on her ward?!

    and please note, this is not the fault of the "NHS", it's not because it's the "British system", I could tell you some beauts from American relatives' experiences in their own country about medical screw ups and arrogance, too!
    just the very bad attitudes organizations cause, especially as it seems the Medical Establishment, mostly in UK, USA maybe Holland too? has very ludicrous Victorian attitudes, including rank incompetance, racism, sexism and simple bloody sadism :/

    Like that video on youtube, female doctor talking about ME, interviews a neurologist and this smug complacent mysogenistic twerp laughing as he basically says as much that ME is hysteria caused by menopusal women not getting enough sex...
    is being a smug retard an essential part of getting an MD, eh? :p

    anyway, on OP, I've saw a few folk state the NHS at least in England, has an official, but secret policy of preventing follow up MRI scans, or exploratory/follow up SPECT scans on ME patients
    if we could find this to be true, it would be a major part of serious litigation, as doing that on a neurological disease is a serious issue of gross bigotry and heinous wrong doing.
  6. justy

    justy Senior Member

    Hi Silverblade, i have been reading your thread and above post with a lot of interest as i feel i have been very badly treated by the medical proffession here too.
    I just wanted to comment on your original post/question about follow up brain scans. As far as i can tell you are lucky to get 1 brain scan in the U.K. I have never been offered one - infact i have never been offered anything, not even the things i have requested (specialist referral, CO Q10 on prescription, Iron tablets that dont make me sick or contain sugar of any kind, antivirals when i had flu, therapy for my agoraphobia - oh yeah and not forgetting empathy and compassion)
    All the best Justy.
  7. garcia

    garcia Aristocrat Extraordinaire

    Silverblade I can't believe I just read your whole post. I share your exact views on the medical profession. Unlike most of the rest of society they are considered above rebuke. As you say it is all about reputation and appearances. Medicine is one of the few professions left where you get instant social status/recognition, even if you are completely incompetent and a complete scumbag. Unfortunately there are too many of those about in the NHS. I've yet to meet a single doctor in the NHS who I would consider competent.
  8. sleepy237

    sleepy237 Senior Member

    CFS the reason the only reason I now hate living in the UK, never thought it would come to that but I hope some day Wessley will have something on his conscience. I just had an MRI for recurring facial numbness, hemiplegic migraine other neuro symptoms, Result normal. No follow up necessary treatment now left between gp/psych. CFS is the only illness that medical research misses out with exceptions of course. I hope one day something will be leaked or unveiled and we will have our rights reinstalled. It is a shame that the good doctors who empathise (you can tell) are bound by guidelines. It's a shocking disgrace. With the government in power now. We are subject to even more cuts.
  9. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    SilverbladeTE - are you able to write directly to the Consultant who saw you to explain that your GP is not interested and is there any other way you can go about it on the NHS, as you are concerned due to new symptoms?

    Or are you able to go privately to have this scan done (? 600-700+ Consultation fee & post scan fee for Consultant to read it)? Even privately most Consultants inform GP as a courtesy but you might be able to bypass - just ask I guess.

    Just a couple of thoughts - i expect you've already thought of all this.
  10. rlc

    rlc Senior Member

    Hi SilverbladeTE, I'm English i'm well aware of how crap doctors can be there, I now live in New Zealand and it's worse here, not only do the Hospitals regularly lose patients tests results and notes they often lose the patients as well.

    However you do have legal rights, and as soon as doctors know you know this their behaviour changes dramatically, I suggest you employ a lawer or find free legal advice, you have failed both MRI and blood test results that are not being investigated, this is obviuosly not a psycological illness and you need further testing.

    Here are your legal rights, it contains a link to how to lodge complaints you can sue for large amounts of money in the uk and doctors know this and are shit scared of it happening, here's a link to a firm that does this

    In my own case i got stuck with a doctor who was beyond useless!! Here we have a patients advocacy group, you may have something similar in your area. I contacted them for advice, then went to see a different doctor at the practce, told them that i had contacted the advocacy people, they said i needed a new doctor immediatly, couldn't do it themselves because they only worked part time, and transferred me immediatly to a new practice, the new doctor who i also informed that i had sought legal advice, investigated my case properly and i had my true diagnosis within a month.

    As soon as doctors know that you will go legal on them, their behavior changes beyond belief, because their are massive consiquences for them if they are found out doing something wrong, you have failed tests, so you have a case! Fight back!!! and don't take this shit!!!!!

    All the best
  11. Enid

    Enid Senior Member

    Talking about useless ric - have you seen the latest survey results posted on the MEAssociation Website (most useful/helpful info on ME/CFS) It's quite shocking - only a total of 9% from within the NHS - the highest block Internet/Charities/Books/Support Groups/Private etc the rest. As well as missing notes/test scans each time for my visits I thought it was incumbent on the medical profession to keep themselves informed. The situation is a disgrace.
  12. I can't afford, financially or all the hassle, to do much about this, alas.
    I'm on welfare and only have quality of life I do at moment by good circumstance
    and with the way the government's trying to end welfare and behaving like scumbags...meh :/

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