The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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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. Countrygirl

    Countrygirl Senior Member

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    Unfortunately @arboretum this is how it is applied in the cases who contact me. They are told it is a psychiatric condition, and, in the case of children, the fault of the parent (MbyP) and that they need to be taken away by the state and locked up in a psychiartic ward.

    Someone else near me who has severe ME has been on the phone to me in a distressed state because she is terrified of being sectioned again by the local fatique clinic as she can't increase her exercise limit. Eariier, they locked her away far from her home for having severe ME.

    Others phone me with ME telling me that they are being forced to take antipsychotics to relieve them of their delusional belief that they have a fictitious illness called ME. Severe ME is not recognised and is misinterpreted.

    The above is what happens at fatigue clinics.......not all perhaps...........but it is not uncommon.

    A medical advisor for ME has read the document and liked it.
     
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  2. MEMum

    MEMum Senior Member

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    Great to hear that Mum is up for a fight.
    The pack and letter must have really boosted her confidence/resolve.

    @anni66 now that your daughter has been discharged from Paeds, your GP may be able to refer her on to Dr Bansal direct, although it seems that most NHS referrals are sent straight to the fatigue clinic. This may still be called COPE, Centre of pain education or similar. At that stage we went for a private consult at Kingston Hospital.
     
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  3. anni66

    anni66 mum to ME daughter

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    Tried but will not be funded - letter has been issued asking for treatment advice. Hadrian's wall is a huge issue- referrals used to be to Julia Newton
     
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  4. MEMum

    MEMum Senior Member

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    Sorry to hear that.
    Although Dr Bansal understands more than most he doesn't have any Magic Bullets. He tried a couple of meds with Amber, such as Acyclovir, an antiviral and Amantidine, which is used for Parkinsons. I think it increases dopamine levels. These did not help.
    He was also able to help with prescribing some antibiotics which led to further periods of remission/improvement.
    I can't remember who I've explained this to... She was found to have high levels of the ASO titre. This stands for Anti Streptolysin O antibodies and is a measure of ongoing strep infections. So she was prescribed 6 weeks of twice weekly injections of penicillin. Towards the end of this, her cognition suddenly improved alongside her stamina and she was able to study AS level Maths and geography for a couple of months, including taking exams. Unfortunately the improvement subsided again.
    Because of the strep indicator, he also had her tested for autoantibodies to receptors in the Basal Ganglia (BG) of the brain.
    She has these antibodies to the "Pyruvate Kinase receptors in the BG". Antibiotics (Abs) helped on 3 further occasions and she now has an A-level in Geography and 2/3rds of a Maths A-level. Sadly her brain has not been up to A-level studies since summer 2014 and no longer responds to the Abs.
    We are confused but grateful that she has had these periods of improvement

    Because of the autoantibodies, we remain hopeful that Rituximab might be worth a try.
     
    Last edited: Jan 3, 2018
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  5. Binkie4

    Binkie4 Senior Member

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    Just in case his clinic is busy at Kingston Hospital, he also sees private patients at St Anthony's in Cheam on Thursday afternoon/evening, occasional Saturdays.

    EDIT: sorry @Annie66. I think I missed your next post. His NHS patients are referred to Sutton hospital. When I was rereferred last year, I saw a nurse who offered GET. I was not allowed to see him because I already had a diagnosis. It seemed his role there is to confirm diagnoses. I then went privately.
     
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  6. Mel9

    Mel9 Senior Member

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    Perhaps she needs on-going, long term antibiotics?
     
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  7. MEMum

    MEMum Senior Member

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    Unfortunately the antibiotics don't work any more.
     
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  8. anni66

    anni66 mum to ME daughter

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    Interesting. Our options here are very limited. GP is willing to consider looking for comorbid conditions - hence HPylori testing, but pretty well scuppered if need referral onwards - tried for immunology and endocrinology.

    Endocrinologist appointment was a Friday afternoon and he clearly wanted to be elsewhere- he had no notes, took virtually no history and would have dished out thyroxine like sweeties - request was made to get some HPA axis and potential glucocorticoid and sulfation issues looked into. Short synthacen test scheduled for next week and will be extremely difficult to make the 9.30 timescale, but we will give it our best shot.

    I have heard frm a patent on another forum who has managed a private appointment with Dr Bansal via Skype which is a really good development. Antivirals have been prescribed together with additional supplements.

    Antibiotics for HPylori made A feel the best she had felt in months - for the duration of the course and a couple of days over.

    At least we do not have the added stress of psychiatric interventions . It beggars belief.
     
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  9. arboretum

    arboretum

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    That's very, very disturbing to hear. I've spoken to three people that have been involved in running three different inpatient clinics for ME, and none of them believed that ME was psychiatric, or that people should be forced to do any more exercise than they are able to do. So I think you should find out what that one in particular is like, and if it actually cares about pacing and not crashing, and doesn't believe ME is psychiatric.

    If it doesn't care about those things, and does think ME is psychiatric, maybe it would be possible to find one that is better, and get a referral to that one instead? If the clinic is against making patients crash or worse, then maybe it won't be helpful, but at least it won't be harmful.
     
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  10. Countrygirl

    Countrygirl Senior Member

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    Update

    Mum and child have been seen by the paediatrician.

    This time, a psychologist was present .....according to Mum a very intimidating one who informed her that the child has no genuine medical problem (she has severe ME).........and therefore she is mentally ill.

    The paediatrician and the psychologist told the Mum that the child has to have regular appointments with the psychologist who will aim to correct her faulty beliefs and then, if she doesn't behave normally, she will be admitted for the recommended intensive exercise therapy.

    I will resist commenting on this............
     
    Last edited: Jan 25, 2018
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  11. Alvin2

    Alvin2 If humans were rational...

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    Get the media and/or the court involved. Right away.
     
  12. Countrygirl

    Countrygirl Senior Member

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    There would be serious repercussion on Mum if we did that @Alvin, although I wish we could. When patients have gone 'public' before they have suffered for it...............had what help they did have removed and been struck off medical lists. The medical profession know how to retaliate.

    Eduation is the only answer.
     
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  13. Alvin2

    Alvin2 If humans were rational...

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    The options here are allow the state to destroy a child's life or use the nuclear option. Education is not going to make a difference. At this point it only makes you feel like your doing something, they have the power and they are willing to use it to destroy lives. You cannot educate them out of using torture.

    Keeping you afraid prevents taking action that could save her, standard channels have failed, this is the best option now. I would contact the Countess of Mar (who has expressed skepticism because of ME/CFS patients being harmed), news organizations, international news organizations, patient groups, go to court, even consider holding rallies, whatever it takes to get this squashed. Being polite and deferential to the state will not prevent this injustice. Perhaps even ask if Jen Brea is willing to make a public statement.

    Even publicly consider moving, we have to protect our child from the state who wants to destroy her future based on lies. Makes for a great sound bite
     
    Last edited: Jan 25, 2018
  14. anni66

    anni66 mum to ME daughter

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    Someone should though. It should be public . Has MP seen unrest? From past publicity it would be easier to have US press raise concerns than UK. Can a big name get involved ?

    If such situations remain hushed up , actions have no consequences and the situation perpetuates itself.
    This makes me angry, sad and sick to the core at the same time.

    Poor mum, poor poor child.
     
    Last edited by a moderator: Jan 29, 2018
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  15. Countrygirl

    Countrygirl Senior Member

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    I appreciate your suggestions @Alvin2 , and, by the way, the CofM has already intervened personallly, but her views have seemly been dismissed by the paediatrician, sadly. So have others of high standing that we all know :) The child's paediatrician however has the last word and she says ME is psychiatric. End of. Another Mum recently went to court and the judge declared that ME is a conversion disorders and Mum lost her case and her child. Judges are/can be persuaded by the BPS expert witness who promotes GET and psychiatric treatment and it is not so easy to make a legal case when the BPS school hold such sway.

    There is more that could be done by contacting the MP, and as @anni66 says, using Unrest, but Mum can't do this alone. I think too she is fearful of challenging people who are viewed as authority figures.

    We probably have a few weeks to find a way of educating the paediatrician. It will have to be accomplished via Mum though and I think she is afraid to challenge them.

    Working on it!
     
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  16. Alvin2

    Alvin2 If humans were rational...

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    What lawyer represented them? One case does not mean she can't win, it means that case did not, a better lawyer, better experts and sometimes a bit of luck can make all the difference. I lost my first disability case, i could have given up or kept trying. I did eventually succeed, it was not easy but it had to be done, repeatedly.

    If necessary or possible change pediatricians, move, national media attention, appeal the ruling. The state will throw its weight around but its not sacrosanct.

    You can't. People who believe lies and think they know everything won't listen to evidence, believe me i have a lot of experience in this area, its a waste of effort that needs to be put elsewhere to get out of this. If you find a way of "educating" the pediatrician then CBT/GET will be dead the next day because the same mystical power can then be applied to the PACE lobby. If it were only that easy it would already be done. Go ahead and try, i would be happy to be proven wrong but expect a 95%+ chance this will fail. Plan the next move and move on it right away.
    I'm sorry the mom is afraid to challenge them and she should not have to be in this situation at all but keeping her child unharmed depends on fighting by any means necessary. Have they contacted Drs @Jonathan Edwards or @charles shepherd or other UK ME/CFS organizations for assistance?
     
    Last edited by a moderator: Jan 29, 2018
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  17. Countrygirl

    Countrygirl Senior Member

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    Yes, another doctor who is well-known here has been invovled @Alvin2. The child's doctor cannot be overruled though.

    Mum hasn't the money nor the fight for a legal case, but there are ways of getting more information to the paediatrician and it has worked in past cases I have been involved with, so I am not giving up hope.
     
  18. Alvin2

    Alvin2 If humans were rational...

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    Contact a UK ME/CFS organization, start a gofundme campaign, go to the media. Sorry i don't mean to sound like a broken record, and i do feel very bad that this is happening, but sometimes you have to fight for your rights, as unfair and uncomfortable and tough as that is injustice will not fix itself (unfortunately) :cry:

    Having more then one doc involved on their side is not a bad idea, there is a something to the old adage "there is strength in numbers".

    I don't know how things work in the UK but around here if you move you look for a new local doctor, if they move they still have to visit the current one, even if its across the country?
     
    Last edited by a moderator: Jan 29, 2018
  19. MEMum

    MEMum Senior Member

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    Could I help by going with them to the psychologist? This inhumane treatment MUST be stopped.

    Most people find it incomprehensible that this can happen in a democratic Western, civilised country.
    It is more reminiscent of Russia!
     
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  20. PatJ

    PatJ far and free I gaze

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    My brain is too fuzzy at the moment to go back and read previous posts so this may have already been mentioned: does the child have orthostatic intolerance? Could she manage a poor man's tilt table test? If she has unusual BP results from the PMTTT then that shows a physical problem, not psychological.

    Irregular body temperature readings (graphed throughout the day) are common in ME and are also obviously physical.
     

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