So this trial was essentially as a platform to generate data to then implement GET for the severely affected. I mean in the severe we shouldn’t even be using the term GET because It isn’t , what they would say is rehabilitation or GAT. What I find bewildering is when I look at pictures of other really severe people the thing that pops in my head isn’t oh they look like could /should be doing more. I understand the concept of central centralisation or other mysterious ways Rehabilitation strategies seem to help “some” in our area and I personally think that’s undeniable from anecdote but i don’t know why that comes to mind as what to focus on for twenty years versus biomedical research and finding medical treatments aside from that fact people like Esther Crawley aren’t really qualified to do the other.
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Professor Crawley BPSU study - Chronic fatigue syndrome (CFS) Severe children Feb 2019 - 2020
- Thread starter Tilly
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So this trial was essentially as a platform to generate data to then implement GET for the severely affected. I mean in the severe we shouldn’t even be using the term GET because It isn’t , what they would say is rehabilitation or GAT. What I find bewildering is when I look at pictures of other really severe people the thing that pops in my head isn’t oh they look like could /should be doing more. I understand the concept of central centralisation or other mysterious ways Rehabilitation strategies seem to help “some” in our area and I personally think that’s undeniable from anecdote but i don’t know why that comes to mind as what to focus on for twenty years versus biomedical research and finding medical treatments aside from that fact people like Esther Crawley aren’t really qualified to do the other.
daftasabrush
Senior Member (Voting Rights)
Have seen earlier media from Crawley claiming that severe ME affects only 10% of adults and 10% of children with ME - as if the 25% figure was open to debate.
The 25% ME Group no doubt would disagree. Seems this like this an another attempt to downplay and disregard the most seriously ill by attempting to irradicate them from official figures.
No doubt those hospitalized during that period who are not just discharged will not be counted since GP won't be notified until discharge.
Those with social services or direct payments for personal care at home won't count, neither will those in nursing homes.
I think we already have stats showing most with severe ME didn't see a doctor in the last year. And that doctors typically refuse home visits to housebound people with ME.
Malcolm Hooper's The Mental Health Movement refers to this denial and revision of facts as a tactic of denial used by the Wessely School
The 25% ME Group no doubt would disagree. Seems this like this an another attempt to downplay and disregard the most seriously ill by attempting to irradicate them from official figures.
No doubt those hospitalized during that period who are not just discharged will not be counted since GP won't be notified until discharge.
Those with social services or direct payments for personal care at home won't count, neither will those in nursing homes.
I think we already have stats showing most with severe ME didn't see a doctor in the last year. And that doctors typically refuse home visits to housebound people with ME.
Malcolm Hooper's The Mental Health Movement refers to this denial and revision of facts as a tactic of denial used by the Wessely School
Tilly
Senior Member (Voting Rights)
Would also like to point out that this is part of the British Paediatric Surveillance unit of the royal College of Paediatrics and Child Health. Who now offer Fabricating and Inducing Illness courses for £500.00. A 2 day course in court witness also at £500.00
Is this ethical? now need to go have more coffee
Oh and the president of the Royal College of Paediatrics Viner, did this study which they felt did not need ethical approval and parents behaviour was implied https://adc.bmj.com/content/89/7/615
They seemed to have had a big dropout, now that could not be because the children were too ill or harmed by treatment? More coffee needed
ME/CFS Skeptic
Senior Member (Voting Rights)
Don't see much wrong with this study. The incidence estimate will probably be inaccurate because some severe patients might not see a pediatrician. But it could give a lower end estimate of severe ME/CFS, according to their definition. The study might give us information on how severe ME is managed and how it progresses.
Lacey Diamond
Established Member
Please clarify what you mean by "not much is wrong"?
1. As far as I can see they leave out homeschooled children. Given the lack of support in schools, there is a large group homeschooled for that reason, because of the ME.
2. They define severe ME in a very strange way indeed so why gather information using public money if that information is highly likely to be inaccurate? Not only do severe and also moderately affected children not see paediatricians much, they don't get GP home visits and the very clinic that is conducting this trial discharges them and leaves them to their own devices if CBT/GET doesn't work.
3. Paediatricians and GPs have no school attendance figures. ME is a fluctuating disease so someone who is mild could easily overdo it and move into the severe category.
I don't think this study is going to get a well defined group of severely affected children. It is worthless.
Lacey Diamond
Established Member
If you look at the recommendations then they mention discussing ways that this will be shared with the patient community and also "strenghtening patient and public involvement". What can we do to help this along do you think?
Esther12
Senior Member (Voting Rights)
I think that's right - this is drawing on data collected routinely though the NHS and you need to explicitly opt out from allowing access to your data rather than being asked to opt in. There are advantages to research like this, but so long as controlled access is being given to people like Crawley I'd want to opt out.
yes I think this is a key point.
Barry
Senior Member (Voting Rights)
Is it a single opt in/out for everything? Or can you stay opted in for sharing data for treatment purposes, but opt out for it being shared for research purposes. It seems to me a very important and clear distinction that patients should allowed to decide upon. Yes, I would like my data to be shared so any treatment (especially maybe emergency treatment) can be more efficient/effective, but no I would not like my data to be made available for research. To me it seems part of medical ethics.
Andy
Retired committee member
ME/CFS Skeptic
Senior Member (Voting Rights)
Might be that I'm putting the bar too low because this is a Crawley study. But I do expect that we will be getting information about CFS children no longer able to follow school: how they are managed, what their prognosis is and how often pediatricians see this kind of patients.
I would still encourage opting in and sharing data though. It might help researchers other than Crawley.
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Sly Saint
Senior Member (Voting Rights)
I opted out years ago when I got a copy of my medical notes and could not believe some of the comments, not to mention the inaccuracies and errors (including a couple of pages from someone elses notes). It is very hard to get the records amended/corrected.
If it were only researchers accessing it that would be one thing, but they are making access, for those who opt in, to all areas of the NHS and potentially other agencies.
Esther12
Senior Member (Voting Rights)
It might, but I don't trust the system at all.
Tilly
Senior Member (Voting Rights)
No you are correct they will not be asking patients and furthermore and more of a worry the Drs will be given their understanding of severity and when reading the cited severity meaning not able to go to school for more than 1 day a week the mind boggles of what this will interpret anything the research wishes.
The elephant in the room this set a president of being able to use such information, without consent and without cortex of the patient.
I wonder if us parents @Sly Saint opted out what they could then blame us for? This for me is a worry.
I think Crawley has an NIHR fellowship which basically pays for someone to replace her in her normal work so she can do research so I the NIHR aren't explicitly funding this I suspect. The Bath NHS foundation seem to be.
