Countrygirl
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This thread has arisen from the discussion that has taken place on the
thread: http://forums.phoenixrising.me/inde...er-with-prof-crawley.56221/page-9#post-937549
We are discussing the best way forward for a mum who has a child in her early teens who has been ill for 18 months with fairly severe ME and who has now been told she must get better within four weeks or face becoming an inpatient and subjected to 'intensive treatment' over a week or so. This will be a disaster for the family. It has happened before under the direction of the same paediatrician, leaving the child very severely handicapped.
Dr NS and TT have already been involved earlier, and the situation improved as a result. But now that the child is still ill the professionals are determined to take action and re-involve EC.
The GP has expressed annoyance when presented by information sourced from knowledgeable doctors and individuals that conflict with his belief system. He was sent the MEA's Purple Book, but I gather he objected to it for reasons I do not know.
I understand the paed. believes ME is psychiatric too, and is referring back to Bath, which 'terrifies' the mum.
TeamPR have already produced a plan of action for Mum but I think she is feeling overwhelmed and may not be able to stand up to the professionals who are making these threats. Mum says 'all the doctors' tell her 'ME is a psychiatric condition', and when she declined/showed reluctance to permit her child to be admitted for the intensive exercise/treatment regime they questioned whether she wants what is best for her child.
This is where TeamPR can make a difference,
We want to produce an information pack for paediatricians who think that ME is psychiatric and/or it is a short-term illness that will respond to GET or, as in this case, intensive therapy/physiotherapy/exercise. Refuting the claim that CBT is the 'only treatment that is proven to successfully treat ME' would also be useful. It would need to be ready by the New Year. In fact, I think it may be better to forward it to the paediatrician with a covering letter signed by a doctor well before Mum's appointment.
It would be great it you could list the documents, scientific papers, and other evidence that could be included in the pack.
@JaimeS has already offered to place some suggestions here. Thank you!
Thanks everyone.
thread: http://forums.phoenixrising.me/inde...er-with-prof-crawley.56221/page-9#post-937549
We are discussing the best way forward for a mum who has a child in her early teens who has been ill for 18 months with fairly severe ME and who has now been told she must get better within four weeks or face becoming an inpatient and subjected to 'intensive treatment' over a week or so. This will be a disaster for the family. It has happened before under the direction of the same paediatrician, leaving the child very severely handicapped.
Dr NS and TT have already been involved earlier, and the situation improved as a result. But now that the child is still ill the professionals are determined to take action and re-involve EC.
The GP has expressed annoyance when presented by information sourced from knowledgeable doctors and individuals that conflict with his belief system. He was sent the MEA's Purple Book, but I gather he objected to it for reasons I do not know.
I understand the paed. believes ME is psychiatric too, and is referring back to Bath, which 'terrifies' the mum.
TeamPR have already produced a plan of action for Mum but I think she is feeling overwhelmed and may not be able to stand up to the professionals who are making these threats. Mum says 'all the doctors' tell her 'ME is a psychiatric condition', and when she declined/showed reluctance to permit her child to be admitted for the intensive exercise/treatment regime they questioned whether she wants what is best for her child.
This is where TeamPR can make a difference,
We want to produce an information pack for paediatricians who think that ME is psychiatric and/or it is a short-term illness that will respond to GET or, as in this case, intensive therapy/physiotherapy/exercise. Refuting the claim that CBT is the 'only treatment that is proven to successfully treat ME' would also be useful. It would need to be ready by the New Year. In fact, I think it may be better to forward it to the paediatrician with a covering letter signed by a doctor well before Mum's appointment.
It would be great it you could list the documents, scientific papers, and other evidence that could be included in the pack.
@JaimeS has already offered to place some suggestions here. Thank you!
Thanks everyone.