tinacarroll27
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Its to be presented to the Medical Research council in the UK. The petition particularly effects patients in the UK
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Investigating using FITNET to treat paediatric CFS/ME in UK (FITNET-NHS)
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Bob
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"To: Medical Research Council".
Last edited:
Snowdrop
Rebel without a biscuit
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@Thanks @Bob I now went back and saw that the answer was right there but I must have skipped straight to the body text or who knows--didn't see it first time round.
I'm having trouble keeping up with the various players as well. Any thoughts on how the MRC might react to some push back on this study?
I'm having trouble keeping up with the various players as well. Any thoughts on how the MRC might react to some push back on this study?
This is listed as a study of The National Institute for Health Research not the MRC.
Something has been troubling me since I first looked at the original post on this thread. (Well, obviously a lot of things trouble me about it, but that is not what I mean.)
It says "Most children with CFS/ME will recover if they receive specialist treatment." This implicitly acknowledges that some children with CFS/ME will fail to recover from that condition notwithstanding being in receipt of "specialist" treatment.
This takes us on to the thorny issue of "Pervasive Refusal Syndrome". I thought that the creepy justification for this diagnosis was that the patient had been cured of CFS and the continuing symptoms were accounted for by something else. The acknowledgment that a group of patients continues to have symptoms of CFS raises problems. What distinguishes the patients with ongoing CFS from those with Pervasive Refusal Syndrome. Are there clearly established diagnostic criteria?
And what is to become of the children who fail to recover? There is usually no need to consider such questions in advance if those with responsibility can be relied upon. Best to consider it.
It says "Most children with CFS/ME will recover if they receive specialist treatment." This implicitly acknowledges that some children with CFS/ME will fail to recover from that condition notwithstanding being in receipt of "specialist" treatment.
This takes us on to the thorny issue of "Pervasive Refusal Syndrome". I thought that the creepy justification for this diagnosis was that the patient had been cured of CFS and the continuing symptoms were accounted for by something else. The acknowledgment that a group of patients continues to have symptoms of CFS raises problems. What distinguishes the patients with ongoing CFS from those with Pervasive Refusal Syndrome. Are there clearly established diagnostic criteria?
And what is to become of the children who fail to recover? There is usually no need to consider such questions in advance if those with responsibility can be relied upon. Best to consider it.
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As in my previous post on this thread, I question the words 'most children recover', as the research, such as it is, doesn't support that.
One can only get high figures by combining 'recovered', and 'improved'. Dr Bell's 13 yr followup lists 37% as recovered, 42% as 'well but still have symptoms'. Only by combining these do you get the 80% figure that people like to quote. Other studies have similar ranges. (See The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review, 1997, QJM Joyce, et. al., which in the section on outcomes for children sites 4 studies from the US in the 1990s -- I haven't been able to look at those studies in full. The Joyce article is free to view.)
As a mother who had two children unwell over about 10 years, I was aware of the worst case scenario, which was the possibility of care proceedings. But to put that into perspective, there are an estimated 25k children affected in the UK, and only a tiny percentage have had care proceedings started against them, so I didn't loose sleep over it. I did try to maintain a positive relationship with our consultants and GPs, and we did have good support (variable, but overall positive) over the years the children were poorly. We have been very lucky to have had a good outcome in that both seem to be recovered now, but that was not a given for several years, and the doctors were overall supportive. (The school was another story, but when they threatened legal action over my son's 'attendance issues', both his GP and then consultant responded 'robustly' and that wasn't mentioned again.) BTW, we did, more than once, decline offers of CBT for the children, on the grounds we didn't think it would be helpful, and that too was not a problem.
I think what we are hearing about Pervasive Refusal syndrome is only cited with regard to one doctor at one clinic, and only anecdotally. I'd be interested to know how many times this has actually happened, and what the outcome was. Having been in contact with a lot of parents through a forum for several years, this didn't seem to be a widespread issue, even though many of those children were being 'supported' by that clinic (not with stunning outcomes I'll add!).
(We only had the option of that clinic about 3 years into our saga, and given the distance, and that by then I'd worked out it would advocate a highly prescriptive approach, which I knew wouldn't work for us, we didn't pursue it. By then I'd worked out what to do to support my child so we didn't go that route. Mostly we only needed letters to keep the school more or less happy, so that was the focus of our support.)
One can only get high figures by combining 'recovered', and 'improved'. Dr Bell's 13 yr followup lists 37% as recovered, 42% as 'well but still have symptoms'. Only by combining these do you get the 80% figure that people like to quote. Other studies have similar ranges. (See The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review, 1997, QJM Joyce, et. al., which in the section on outcomes for children sites 4 studies from the US in the 1990s -- I haven't been able to look at those studies in full. The Joyce article is free to view.)
As a mother who had two children unwell over about 10 years, I was aware of the worst case scenario, which was the possibility of care proceedings. But to put that into perspective, there are an estimated 25k children affected in the UK, and only a tiny percentage have had care proceedings started against them, so I didn't loose sleep over it. I did try to maintain a positive relationship with our consultants and GPs, and we did have good support (variable, but overall positive) over the years the children were poorly. We have been very lucky to have had a good outcome in that both seem to be recovered now, but that was not a given for several years, and the doctors were overall supportive. (The school was another story, but when they threatened legal action over my son's 'attendance issues', both his GP and then consultant responded 'robustly' and that wasn't mentioned again.) BTW, we did, more than once, decline offers of CBT for the children, on the grounds we didn't think it would be helpful, and that too was not a problem.
I think what we are hearing about Pervasive Refusal syndrome is only cited with regard to one doctor at one clinic, and only anecdotally. I'd be interested to know how many times this has actually happened, and what the outcome was. Having been in contact with a lot of parents through a forum for several years, this didn't seem to be a widespread issue, even though many of those children were being 'supported' by that clinic (not with stunning outcomes I'll add!).
(We only had the option of that clinic about 3 years into our saga, and given the distance, and that by then I'd worked out it would advocate a highly prescriptive approach, which I knew wouldn't work for us, we didn't pursue it. By then I'd worked out what to do to support my child so we didn't go that route. Mostly we only needed letters to keep the school more or less happy, so that was the focus of our support.)
It is my anecdote but I was warned it could happen prior to it happening and hence I covertly recorded the consultation. Part of the issue was a local paediatrician asked for more input and at that point Crawley did her reassessment. Without that I think with the bath service the only time a doctor sees the child is at the start. I also think Crawley doesn't see many patients either.
Nothing happened apart from a lot of stress. The local CAMHS consultant said they don't do these new diagnosis such as PRS. She (the local CAMHS consultant) did offer to refer to the units that Crawley was pushing for but she didn't push. I pushed for a second opinion but that was a challenge as the local paediatrician couldn't get funding for an expert and was put off the idea of Nigel Spreight by his 'scary video'. Eventually we did get a reassessment by other local paediatricians who agreed with an ME diagnosis but really didn't have a clue about anything.
My child is no longer a child and so gets no medical care or any support.
mango
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Esther12
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That was confusing to try to read. Don't really know if it's being reviewed.
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You need to find where you can view the original attachment, only then does it make sense, as their response is in a second column which doesn't show. Basically they say they do hold the information but as they'd have to go through individual files to find it, it would exceed the time requirements for foi requests. So no info was forthcoming.
via:
http://www.nature.com/naturejobs/science/jobs/594797-research-associate-for-fitnet-nhs
http://www.nature.com/naturejobs/science/jobs/594797-research-associate-for-fitnet-nhs
-
- Research Associate for FITNET – NHS
School of Social and Community Medicine
Salary: £31,656 – £35,609
Open ended contract staff
Part time
Job number: ACAD102251
We are seeking a talented and able social scientist to join a team of researchers working on a large trial investigating internet based CBT for children with Chronic Fatigue Syndrome (CFS/ME). You will have significant experience in conducting qualitative research, interviewing children and working with NHS clinical teams. You will be exceptionally organised, have a good publication record and be willing to travel long distances around the UK.
For informal enquiries please contact Prof Esther Crawley 0117 331 4099 or via email: esther.crawley@bristol.ac.uk
The University of Bristol is committed to equality and we value the diversity of our staff and students.
To apply, please click on the Apply button to be redirected to our website, enter the vacancy number into the job search and follow the link to the online application process.
The closing date for applications is 18 October 2016.
Interviews will be held on Friday 21st October 2016.
…
Don't forget to mention Naturejobs when applying.
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Large Donner
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RogerBlack
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Coming to this late - I idly wonder what the 'activity' arm is.
It's self-guided - which may somewhat mitigate this - but if you encourage parents hard enough to do GET or significant exercise, this may crash patients, and make any placebo effect go away at best, and at worst significantly worsen their condition.
Which would of course make FITNET look awesome in comparison.
I especially like the 'we can change the protocol in the middle' - so as to defray criticism from them differing from their protocol ala PACE.
What a wonderful caveat to stick in.
It's self-guided - which may somewhat mitigate this - but if you encourage parents hard enough to do GET or significant exercise, this may crash patients, and make any placebo effect go away at best, and at worst significantly worsen their condition.
Which would of course make FITNET look awesome in comparison.
I especially like the 'we can change the protocol in the middle' - so as to defray criticism from them differing from their protocol ala PACE.
What a wonderful caveat to stick in.
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@Dolphin Boy, she wants help NOW, doesn't she.
https://www.timeshighereducation.co...research-associate-for-fitnet-nhs/?trackid=10
https://www.timeshighereducation.co...research-associate-for-fitnet-nhs/?trackid=10
Large Donner
Senior Member
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Is this normal? Aern't publicly funded organisations bound by employment laws etc and Human resources practices. Does Crawly get to prescreen?
Snow Leopard
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Is it just me or does £31,656 seem kind of low for a social scientist with a "good publication record"?
worldbackwards
Senior Member
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I expect "good" is a relative term here.
slysaint
Senior Member
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The OHC have just launched their new online platform; interesting timing. Also after the release of the PACE data they also released new Guidance on Pacing. They've also updated most of their videos and are now also aiming at Fibro patients.............interestingly in most of them AH refers more and more to Chronic Fatigue rather that ME/CFS.
All this, coincidence?
Sorry, who are the OHC and AH for my foggy brain?
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AH OHC - Alex Howard and his Optimum Health Clinic ..... When Alex and his therapists refer to ME, its always "ME/Chronic Fatigue", they are sure to conflate .... or just 'Chronic Fatigue'.
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AH OHC - Alex Howard and his Optimum Health Clinic ..... When Alex and his therapists refer to ME, its always "ME/Chronic Fatigue", they are sure to conflate .... or just 'Chronic Fatigue'.
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