Perhaps this should be a downloadable resource - very useful as most GPs and paediatricians go by NICE guidelines.
Wider family member is a geriatric consultant and considers exercise to be the most important treatment.
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Hi
@anni66 Happy New Year!
The original plan was to send the Mum a few pages of helpful arguments specific to her case.
I am very busy with other ME advocacy-related work, so initially couldn't allocate much energy-time to it; however, it was clear that we were running out of time as the deadline for the child to recover from/improve significantly (not sure if the paediatrician would accept 'improvement' alone) is January..............I don't know the exact date. I therefore decided that I needed to put a lot of time into it, but did not have the time to be very selective. I also thought I would try to design a booklet that would appeal to the eye and so increase the chances of a doctor flicking through it. I don't have any fancy software to do this, and so someone else with professional design skills and appropraite software, someone like JD Lucas, could improve on it.
There was clearly not sufficient time to produce a comprehensive document, so my aim is to present sufficient evidence/information/opinions of respected and experienced clinicians/scientists that would make the paediatrician realise that GET and certainly rigorous/intensive exercise therapy is not only inappropriate, but downright dangerous.
I have also added a few paragraphs about the precedent set by the Montgomery case in 2016 which makes it the legal responsibility of the doctor to warn the patient/parent of any potential negative consequences of any treatment. Failure to do that, even if it is the consequences of ignorance, is not accepted in law as justification for not informing the parent of possible detrimental side-effects. In this case for example, a failure to warn the family that GET or intensive exercise can lead to severe and long-term/permanent deterioration would place the doctor in a legally risky position. It the child becomes more severe as a result of this recommended management/treatment plan, the doctor cannot use ignorance of the potential risk as justification for failing to inform the patient of the dangers. She will be liable in law and therefore can in theory be sued.
The urgency in this case is to ensure that there is sufficient doubt about the wisdom of her proposed course of action to allow the parent to reasonably refuse to agree to the hospitalisation and any course of GET. We are forced to work with the NICE guidelines here which are hopelessly inadequate/downright dangerous, so we are somewhat hamstrung in making a cast-iron case from NHS-officail channels, so I have had to appeal to evidence outside the UK, which doesn't impress UK doctors and evidence within the UK which is not considered of great weight, but it is all we have and commonsense dictates that it strongly 'suggests' that the proposed course of treatment is highly risky and there is no evidence that proves it is efficacious. ..........while the evidence that has been accepted is now considered to be questionable and is being challenged.
We also do have the evidence of one particular child who after being forced through this treatment was left effectively paralysed and remained very sick for a few years. Others we hear have walked into the hospital and, after being subjected to the proposed treatment have been stretchered out/been reduced to using a wheelchair. However, this level of evidence is ignored and the parents are too afraid to allow their cases to be used as they fear, with good reason, retribution by the medical profession for complaining about the harm that has been done. When this has been followed through in the past, the complaint is rejected and any useful care that has been in place has been withdrawn as a 'punishment' for complaining.
I think the booklet presents adequate evidence for the Mum to use in this case and, hopefully, to share with the paediatrician; however, if it is to be used in a wider context, I think other 'improved'/more weighty evidence could be presented if we had more time. It does contain the most important section of all: GET is inappropriate/dangerous/ harmful.
There are more than 50 references to academic papers and links to web sites for the doctor to follow through and research for herself.
I have also added an article written by Dr Bell on the prognosis of ME. Based on his 30 years of experience he has concuded that even after many years/decades, adults who became ill as children still have to lead a very restricted life style in order to control symptoms. I included this as the paediatrician thinks the child should have recovered in a few months.
I am happy to give anyone the pdf of the 21- A4 document, but my suggestion is that it forms the basis of a new extended booklet now there is no time limit. This would need a group to work on it and find ways of improving it now there is the time to do so.
I am advised not to place the pdf here on the open forum as it would link to private identifiable information.
The ongoing concern here is that the paediatrician won't read it and pursue the proposed 'treatment'. The doctor can appeal to the same law that is used to ensure that Jehovah Witnesses cannot prevent their children receiving a blood transfusion if it is needed to save their lives. Here, if the paediatrician is happy to be led by Bath, she can use those powers to take the child and inflict a course of intensive inpatient therapy against the wishes of the patient and family. She has the law on her side at this point, but not if she fails to warn of the potential consequences, but, by that time, it is too late. The damage will be done. It is at this point too that a diagnosis of Pervasive Refusal Syndrome is made (or PAWS..........Pervasive Arousal Withdrawal Syndrome). As you will have seen from a previous post, EC has now written diagnostic guidelines for this in which she claims that PEM is a key diagnostic symptom of PRS (unbelievably). I also have evidence that paediatricians are informed that 'severe illness is not on the ME spectrum'...................so I think I am correct in saying that when a child deteriorates into severe ME as a result of inappropriate treatment, the paediatrician can now appeal to the new guidelines for PRS, observe the consequences of severe PEM caused by the treatment, and award a diagnosis of PRS/PAWS..............a useful get-out cause for medical abuse and a way of avoiding legal consequences.
It is never simple and straightforward.