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David Tuller: My brief encounter with Prof Crawley

Discussion in 'General ME/CFS News' started by Countrygirl, Nov 20, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    It doesn't work like that though.

    The doctor says the illness is psychiatric.

    This particularly child has been given four weeks to recover from severe ME.

    If she is still ill by January the doctor believes it is in the best interests of the child to be admitted to hospital to under go 'intensive treatment'. If the mother disagrees, it is very likely that social services will become involved and the mother's rights will be rescinded. This is the usual pattern. We are getting close to the threat of another FII case.

    Action needs to be taken to ensure Mum doesn't have to be forced into refusing hospital admittance, so the consultant must be persuaded to change her mind.
     
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  2. Countrygirl

    Countrygirl Senior Member

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    Yes, there may be but I don't know whether he/she is effective. It is worth trying.
     
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  3. anni66

    anni66 mum to ME daughter

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    Contact Tymes Trust. They have Nigel Speight onboard as paediatrician . This us simply unethical. My daughter has been ill for nearly 2 years- we turned down EC involvement.
    If she has funding i would also recommend the ATP profiles test - this provides objective info re flawed energy production that would illustrate the fallacy if exercise.
     
  4. Countrygirl

    Countrygirl Senior Member

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    Yes, thanks @anni66 . They have both been involved but no doctor is obliged to listen to them and this paed. has her own ideas about ME as she believes it to be psychiatric.

    I have just been informed of Gillick's competence whereby a solicitor signs a document stating that the child has competence and then the doctors have to allow the child to reject treatment and also refuse to be re-referred to you-know-where. That should go a long way to protect mum as it won't be she who is refusing treatment and re-referral and so she should be protected against accusations of FII. (I hope!)
     
    Last edited: Nov 25, 2017
  5. anni66

    anni66 mum to ME daughter

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    Re DT, it would be good to have such instances in the international arena- behaviour may be modified if EC + Co are under scrutiny.

    Also If MPs have seen unrest they may be unsettled to discover that such treatment is being meted out to children and families here in C 21st Britain.....
     
  6. anni66

    anni66 mum to ME daughter

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    What age is child ?
     
  7. anni66

    anni66 mum to ME daughter

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    Could second opinion come from someone like Dr Rowe ? ( If he could be persuaded?).

    Also, have GP and Paediatrician been supplied with a copy of the international paediatric primer - this does explain that severe ME does happen to children , and clearly explains what FII actually is , and how rare it is.it also clearly states it is not a psychiatric illness.

    I really feel that GMC should be called into frame, the lack of knowledge and ethics of this are shocking .
    If there are the number of cases that Tymes Trust and AfME are reporting, then there are serious questions to be asked regarding medical knowledge and process for a neurological disease.

    From left field ( and after the benefit of a second glass of wine) - would Jen Brea get involved ( perhaps expressing ongoing concern re the situation with children in UK )- she has already made her opinion of EC clear?
    The publicity this could generate would perhaps be the most effective means of shining a wider light on current practices?
     
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  8. MEMum

    MEMum Senior Member

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    What about Vince Cable? I know it's not his constituency, but he was one of the MPs who attended Unrest screening in Speaker's House. He might be able to suggest a way forward.
     
  9. garcia

    garcia Aristocrat Extraordinaire

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    Probably a stupid question, but can the family not change GPs? It sounds like the current GP is going to be an obstacle.
    Also could Charles Shepherd not get involved?
     
  10. Binkie4

    Binkie4 Senior Member

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    Could the mother and child be advised that if EC or GP or any official contacts them, they should keep a careful record of the date, time, call length, name of official and their role, for use in later proceedings. Ringing half hourly is harassment imo. Make sure caller knows that notes are being taken.

    It would be even better if mother sounded confident and assertive. It might cause concern but not to EC I'm sure. I expect the mother is finding it difficult to sound confident: she may be terrified.

    One problem in trying to use Montgomery vs Lanarkshire is that EC insists there is no evidence that GET is harmful.i think I noticed it in the notes from a week or so ago and we had a letter some time ago. It somehow seems nonsensical that she is able to keep repeating it ad infinitum. She must believe it. How?There has to be a way through this. If she has a decent MP, s/he might help.
     
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  11. Deepwater

    Deepwater Senior Member

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    Would absolutely agree. I discovered to my joy that even the Department of Work and Pensions pretty much roll over if you have these test results.
    Even EC and her dim enablers would surely realise they be in a very sticky position if the child were to become worse after an exercise regime enforced in the face of test results indicative of mito dysfunction.
    If cost is an issue, I'm sure we could crowdfund.
     
  12. anni66

    anni66 mum to ME daughter

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    You may find that you have to write an explanation of it- our gp and paediatrician could not fathom it out, once i pulled together an explanation ( basic gcse/ national 5 biology) attitudes did change a bit and GET was not pushed.
     
  13. Countrygirl

    Countrygirl Senior Member

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    Thanks @garcia

    However, ME isn't accepted as a physical illness by any GP in the area so there is little to gain and also it is rural so there is little choice. The consequence would also be the same: a referral to the paediatric clinic.

    Maybe CS could contact them, but, based on past experience, he advises the GP to refer the patient to the clinic which is exactly what we don't want.
     
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  14. Countrygirl

    Countrygirl Senior Member

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    Thank you for the suggestion.

    I will pass it on :) and I am almost certain that cost will be a prohibitive factor, so if people will be prepared to crowd fund,, that would be wonderful..

    Can you give me an idea of the price, please?

    Thank you!
     
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  15. Countrygirl

    Countrygirl Senior Member

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    All very useful advice which I will use for Mum. Thanks!

    It makes a complete nonsense of EC's claims above. Children Love GET!!!!:rolleyes:

    This child is bedbound in the main.

    I think mum also needs to take other of the information stored in this wonderful resource.

    Perhaps a list of documents about the dangers of exercise could be compiled. Do we have an article already that lists them?
    I sent the new primer some while ago.
     
  16. Mel9

    Mel9 Senior Member

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    Can she change to a more intelligent GP?
     
  17. Countrygirl

    Countrygirl Senior Member

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    She can't chose a practice. but must be registered within her catchment area, and no doctor is prepared to learn about the illness. The GPs back each other up. Unless you have money and can travel, it is very difficult if not impossible to escape these situations if a minor is involved. As adults the only choice is never to see a doctor even when other non-ME problems arise because they can't overcome their ingrained disbelief and, in the words of a GP in the area, their contempt of anyone with a diagnosis. Mum, after all, is in Muppet territory. ;)
     
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  18. Sbag

    Sbag

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    I would get her to record any phone calls she gets from them. Radio 4 would probably be interested after all they have done recently.
    Also quote BMJ latest report which says only use GET for mild cases and it isnt a cure etc. And quote the other latest statements from CDC etc.
    List them all factually and ask them to respond with why they want to use the treatments they are recommending. Then it will also give a basis for the harmful argument.
     
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  19. Countrygirl

    Countrygirl Senior Member

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    I supplied the primer some time ago, but, as I know from my own struggles as we live in the same area, that they do not take much notice of information of material supplied by either the patient or doctors of another viewpoint, even if it is based on science. For example my GP recently told me, after she was contacted by one of the PACE mob,when I subsequently mentioned the published papers of the the main scientists in the field, that the claim that ME was a physical illness was 'only their personal opinion' (!) and she disagreed with it. I have kept away ever since.

    As I mentioned a while back, when trying to raise the problems of local ME people with the relevant county authority here, they told me that they would not discuss the non-existent illness ME with me or anyone and were surprisingly rude. I tried again by phone, and they slammed the phone down on me on the grounds, they said, that their boss had instructed them not to take complaints from ME patients. There had been a serious case where the vicar had died because he had become seriously ill with ME as he could not care for himself and the GPs had told him it was all in his head and they refused to sanction any care. There were many other serious complaints which I forwarded as well. The authorities would accept none of them as 'no compliant will be accepted from someone with a diagnosis of ME'

    Much to my astonishment, on the Sunday, I received a phone call. The person was a member of the GMC who said she had heard of the problems and was very concerned but that she could do nothing. She said that the doctors need educating but in this area, she said they seem resistant to this and that they would rather be out on their yachts than in a lecture theatre. She told me that it is a GP' s prerogative to disbelieve in an illness if they, in their medical judgement, decided it did not exist. They generally don't do this, of course, as patients could die and they would then be held accountable. I was astonished that this was the case. This was some time ago, but the attitude seems just as much if not more ingrained now. Sadly, my 'friend' has retired from the GMC.

    I am just recounting the above to illustrate that this is difficult territory.
     
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  20. Countrygirl

    Countrygirl Senior Member

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    Now that is a good idea!

    I will pass on all your suggestions, although mum is overwhelmed with all she has to cope with.
     
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