The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Nov 28, 2017.

  1. PinkPanda

    PinkPanda Senior Member

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    I get that, but not including any of the biochemical research on adults that prove the biochemical basis of ME/CFS might also be a problem. Many people believe ME/CFS is a psychological condition in both adults and children and the studies might be important to refute that. And I haven't seen any studies like that on children yet.

    Does EC have anything to back up her claims? Otherwhise we could include that there is lacking evidence of the claim that ME/CFS differs so strongly in children that they might improve on exercise, while adults worsen on it.

    I understand if you guys might not want to be that confrontational though, as not to elicit some emotional anti-reaction.

    The art of arguing with people who are not interested in information, but only want to affirm their own beliefs :vomit:
     
    Last edited: Nov 28, 2017
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  2. PatJ

    PatJ far and free I gaze

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    If the doctor has entrenched views then reason and evidence aren't likely to work. A more effective approach to avoid forced therapy might involve the doctor's superiors, the media (as has been mentioned), and/or a sympathetic politician or lawyer who might have some influence. Basically, if the doctor involved isn't interested in evidence that contracts his beliefs, then you need to involve people who aren't so biased and are willing to look at the evidence against forced treatment, and who have the authority or power to prevent forced treatment from taking place.

    A human rights organization might be helpful. Anyone who can get the media to see this forced treatment as child abuse would also be helpful. The fact that "It has happened before under the direction of the same paediatrician, leaving the child very severely handicapped" is something the media, child advocacy organizations, and a medical ethics committee may be interested in.
     
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  3. lnester7

    lnester7 Seven

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    What about a poor’ men tilt table test with pictures of the BP and HR variations?
    2) Write to David Tuller.
    I will try to help but would be nice to have a firm plan of who is doing what so we don’t all go after the same things.
     
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  4. Large Donner

    Large Donner Senior Member

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    In the UK ME or CFS IS NOT listed as a psychiatric condition. It has been clarified over and over again in official circles like the Department of Health and they clearly state that they are clear that it is neurological and subscribe to the WHO ICD code.

    That needs to be clear with this GP for a start, her personal opinions DONT COUNT. If she is treating ME as a psychiatric disorder contrary to the informed consent of the patient she is inline for a GMC hearing.

    I think someone needs to write to her asking her if she is treating ME as a psych condition contrary to the ICD code and the DOH. Are all the other doctors in her practice also doing the same or is it just her and is it the policy of the practice she works at to ignore the ICD codes.

    Dont accept any waffle reply, either yes or no!

    Maybe also source the statements form Crawley saying that 30+ % children dont respond to CBT GET etc and that she states that "CFS" is more than one illness and ask he if thats the case how does she know which on of those illnesses this child has.

    Make it clear that the claims made by Crawley are not replicated by other groups and that they are of dubious content and that the treatments can and do have severe contraindications.
     
    Last edited: Nov 28, 2017
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  5. andyguitar

    andyguitar Senior Member

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    Ok I suggest the mum tries this. Attack the diagnosis. The medics are supposed to rule out ALL other possible causes of the patients symptoms before making a diagnosis of CFS or ME. Countess Mar asked a question in The House of Lords recently (a few days after I had a meeting with her). I will post the Ministers answer here shortly. Very interesting.
     
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  6. andyguitar

    andyguitar Senior Member

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    This is her question and the relevant part of the Ministers answer. Cant get it transfered from Gov website to here so am copying it out. Q, 6th Nov 2017. "In the light of the BMJ best practice guidance on CFS published in July, whether there are any NHS tests available for autoimmune and metabolic dysfunction" A, Lord O'Shaughnessy. "The current National Institute for Health and Care Exellence guidance on ME/CFS does not recommend routine autoimmune or metabolic testing but advises that diagnosis should be made after all other possible diagnosis have been excluded"
     
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  7. andyguitar

    andyguitar Senior Member

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    If the mum can afford it a lawyer could help. There are some good ideas on this thread but to my mind the most effective way of dealing with a situation like this is to try to undermine the process by which patients (particularly children) are diagnosed. There is a legal mechanism that might be useful. Judicial Review. This gives a High Court Judge the opportunity to decide if a process is lawful. Fairly sure it could be applied to this situation. Mum might be able to get Legal Aid for this but she needs to act quickly.
     
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  8. GONZ0hunter

    GONZ0hunter

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    I would use the media to force the hand of a govt official or hospital but that’s how I think. If the mom isn’t willing to help not much can be done
     
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  9. Countrygirl

    Countrygirl Senior Member

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    I have been busy today and haven't had the chance to catch up yet.
    However, I don't think it is a case of Mum not being willing.......it is more a case of her being totally overwhelmed and no doubt at the end of her tether.

    She needs direct personal help as well.

    We will see what we can do about that. ;). No guarantees, but there are some offers..............
     
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  10. Revel

    Revel Senior Member

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    Crawley can "believe" what she wants. Surely, the onus is on her to prove this point?

    I did a brief search online tonight and found a couple of studies analysing specific physiological aspects found in children with CFS, and the conclusions reached were very much in line with those seen in adult CFS patients.

    There are many of us, here on PR, who became sick as children and remain so as adults. When I was 15, my parents were given the stark choice of having me admitted to the local mental hospital for "therapy", or have me permanently removed from their care. That was back in the 80's and I cannot believe this practice is still going on - and, yes, I became more sick as a result.

    I wish there was some way that we could dispute this "belief" of hers and lay it to rest, once and for all. So tired of hearing her spout unsubstantiated garbage and getting away with it.
     
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  11. Countrygirl

    Countrygirl Senior Member

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    I am so sorry to hear what happened to you @Revel. That is disgraceful but I do remember others at that time who were being treated this way. It is abuse.....pure and simple. And, yes, it is absolutely disgraceful that it is still going on today.

    Unfortunately, all paeds defer to EC and she has all the power still and doctors are very resistant to reading the science of this disease. As one GP with whom I was discussing this with recently said to me when I told her about the scientific papers that have been published and the experience and knowledge of those leading clinicians who have specialised in the illness for many years, their knowledge did not accord with her opinions and so she dismissed them as of no interest to her. She believes what the BPS has told her and she doesn't want to consider anything that counteracts that view. Her mind is closed. It is irrational and unscientific, but it doesn't seem to trouble doctors with this mindset.

    No matter how many scientific papers and knowledge we present to these doctors, they have closed minds. It doesn't matter to them that their belief system is in opposition to guidelines. They have the power and they will misuse it. .

    From my experience, you cannot challenge a doctor's faulty belief system with evidence. You are just banging your head against a brick wall. They are trained to assimilate a monumental number of facts, but they don't seem to have the intelligence, in many cases, to apply their knowledge or to acquire new knowledge. Well, doctors are trained I guess and not educated.:)
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    I was confused, too, @Joh and was not sure if @Countrygirl meant that we build a team at Phoenix Rising (PR) to help brainstorm and help this mother or she is trying to hire a Public Relations (PR) team?

    I totally agree @PatJ and I think trying to change this doctor's mind is a waste of time and effort. The only options now seem to go above or around the doctor to a superior, the media, a politician or hiring an attorney, exactly as you said. Could any of these help @Countrygirl?

    I was wondering about this, too, and if all of the institutions above in the UK are corrupted re: ME/CFS, could it help to go to an International human rights organization outside of the UK?

    @Countrygirl, I can't remember, but what was the sequence of events that finally led to Karina Hansen being released from Per Fink's hospital? Could that same process intervene here?

    That seems like it should be helpful in theory. Do doctors on the NHS have to follow the ICD codes (in theory)? Why is this not considered child abuse?

    What kinds of things would help the mom? Would a "Go Fund Me" page help or an e-petition so she can hire an attorney?

    I can't believe it either and this stuff just boggles my mind and makes me feel like the NHS is back in the 1950's.

    Me, too. It breaks my heart :cry::hug::heart:

    I agree and the only option is to go above or around this doctor who is not going to change her mind even if presented with a mountain of evidence.
     
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  13. Large Donner

    Large Donner Senior Member

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    Doctors can have opinions of course but not being informed enough to allow the patient not to comply with informed consent is not acceptable.

    People may be in precarious positions when it comes to their children, but asking for clarification in writing for a stance is something I have used in the past regarding a bigoted stance with a doctor before.

    You need to state what you believe their position is in writing and to get them to either confirm of deny it, at the same time asking them if that is the position of their whole organisation contrary to national and international directive and if it is only that named condition that they exhibit this potential bias on or others.

    I did this previously with a disability doctor assessment for a friend and the organisation shat their pants rectified the situation, dealt with the doctor and the person won their disability claim.

    In this case it may be advisable to write the letter from the stance of pretending not to know what to do and asking for the docs opinion on the condition so that one can make an informed choice especially to do with the efficacy of the treatment and potential harms.

    Its no good the GP in this case just brushing off material from other docs etc explaining that ME is a neurological condition (as she appears to have done) by saying,"that's just their opinion" because she appears to just be stating her opinion. Unfortunately for her that opinion is at odds with the DOH directive and the many statements made in parliament to clarify the issue.
     
    Last edited: Nov 28, 2017
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  14. anni66

    anni66 mum to ME daughter

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    I have heard from other parents that Dr Bansal at St Helier and Epsom hospital " gets it' when it comes to ME. ( No exercise, rest, particular supplements, antivirals)

    He has a specific interest on viral triggers, so if viral onset, and if child is up to travelling and we are up to crowdfunding to get a private consultation , it may provide a second opinion that is capable of countering the current narrative.

    I don' t know the waiting time for a consult, but can get in touch with other parents who have gone down the private route.
    As he retires next year it may not be possible to get a referral on NHS ( out of area can also be difficult to secure)

    The info pack remains a good idea - this idea may provide a direct counter move.
     
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  15. Learner1

    Learner1 Professional Patient

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    As a mum who's had a very ill child, and whose been through a lot of blind alleys and bureaucracy on the way to a cure, it seems like the priority of the mum here should be to prevent damage to the child at all costs. If the child is damaged, it makes everything more difficult going forward. And GET would be damaging.

    So, a multipronged attack might increase odds of success.

    First, with the GP. As has been pointed out, have all other diagnoses been discarded? Has the child's immune system been tested - T cells, B cells, immunoglobulins with subclasses, autoimmune antibodies? Any look at the CSF? How about infections - have IgG, IgA, IgM, and PCR tests (as appropriate) been run on all the common viral suspects? B12 and other vitamin deficiencies? Iron panel? Mitochondrial function, carbon dioxide, POTS or CPET testing? Endocrine testing? Genetic testing? Could it be mitochondrial disease?

    If not, a letter from a lawyer requesting that due diligence be done with the missing tests prior to any forced action being taken. This should buy some time. I believe a lawyer has already volunteered if I read correctlybon the other thread.

    Next, a website with the current research should be put up - does this exist anywhere? It could be pointed to for info, or used to tell the girl's story, and to educate the news media and public. With the NIH research Centers of Excellence announcements, the IOM info, the CDC change, the September STAT news article, the NICE Guideline reconsideration announcement and the International ME/CFS Pediatric Guide.. And links to research mentioned here and by Naviaux, Chris Armstrong, Neil McGregor, Alan Light, Maureen Hanson, Susan Levin, Mady Hornig, Ian Lipkin, Nancy Klimas, Jonas Bergquist, Andreas Kogelnick, Maes and Morris, Garth Nicholson, Sarah Myhill, Martin Lerner, John Chia, as well as Solve ME/CFS and OMF links.

    Then, politicians. Can the Countess of Mar or any politicians who responded to Unrest be drafted to prod the local medical authority into backing off of the forced treatment, using the website as an educational tool?

    Then, interest the news media, using the parallel with Karina's story? With the GP's or EC's pronouncements, the lawyers and politicians letters, and any lab work confirming a biological disease?

    Finally, this underscores a search for what is wrong with the girl, and getting her proper diagnosis and appropriate treatment. This, above all, is the goal. She and her mum need help in finding the answers and working towards symptom improvement, if not a cure.

    Best wishes to the mum, the girl, and their family...persistence pays off. And what habectgey to lose?
     
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  16. anni66

    anni66 mum to ME daughter

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    I think you would need a lawyer' s letter for the breadth of tests to be accessed. We have a GP who is trying to be supportive, and is learning, but would not authorise that level of testing.
     
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  17. Countrygirl

    Countrygirl Senior Member

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    Thank you everyone for your excellent responses and helpful information..................please keep them coming.

    Conversations are continuing behind the scenes and all suggestions are being considered. :):thumbsup:

    I am sorry my term 'TeamPR' has caused confusion. It was used on the other thread, and refers to the members of Phoenix Rising. I apologise for the misunderstanding.........................

    :)Definition of TeamPR = a collection of intelligent and knowledgeable people who form an effective force against the damaging misinformation that is disseminated by the BPS proponents. :hug:
     
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  18. Joh

    Joh Inactivist

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    Not sure if I have upset anyone with my remark that Crawley claims ME is different in children and adults? Wanted to clarify, that it's not my opinion and not backed up by science - just wanted to mention that we have to anticipate this response if she's involved.
     
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  19. Deepwater

    Deepwater Senior Member

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    We also have to anticipate that she would acknowledge ME/ CFS is neurological but claim she can actually change the neurology with her "treatments". The flaws in her own studies and research papers might have to be spelled out.
     
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  20. fingers

    fingers Senior Member

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    Brief comment on above comments:
    • Quote from lawyer working in the field for 25 years "it ?(the system, social services etc.) scares the shit out of me" - conclusion: paying a lawyer is a waste of money
    • Quote from MP (who is also a QC) in relation to the SS "I have no jurisdiction" - conclusion: don't waste energy contacting MP
    • Make sure you are happy with the diagnosis of ME (CFS if they must) - have all appropriate elimination diagnoses been covered?
    • GP's and paediatricians will generally follow NICE guidelines, i.e. GET and CBT; a supportive GP or paediatrician is like gold dust - conclusion: if possible, change GP and/or paediatrician
    • Any evidence or scientific papers other than PACE will not be taken notice of
    • First line of defence against GET/CBT/LP is to simply not turn up - this will probably result in child protection proceedings; before getting to this stage it might be worth attending consultations with an advocate who might be able to talk doctors round
    • Once in CP proceedings, turn up to a few meetings with advocate; try to protect child from these...haha child protection - the irony is that it is the child and the family who are being abused, but the abusers won't get that, they are just part of 'the system'
    • When you get bored with meetings, don't bother turning up; CP proceedings will fizzle out and they will walk away from it all - you can go through a complaints procedure, but this is also a waste of energy
    The above is a tried and tested approach.
     
    Last edited: Nov 29, 2017
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