UK NICE - Projects to support the development of the NICE guideline on ME/CFS: diagnosis and management

Jonathan Edwards said:
The fine print seems to imply that the 'researchers' would have to be social science people with expertise in focus groups. They would need somewhere to advertise for volunteers - which ought to be through a support charity. Presumably there are academic units that bid for these things but the timeline is very tight.
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Given the timescale, does anyone have a feeling that this is a fait accompli?
 
Tilly said:
I have just noticed the terms have changed to include encephalopathy down grade until it is meaningless?
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It's been like that since the start of the review process. I believe @Jonathan Edwards will confirm that we don't have firm evidence for encephalomyelitis (inflammation of the brain and spinal cord) in all, so encephalopathy (a general term that means brain disease, damage, or malfunction) would seem reasonable to include as a possibly more accurate term, so hardly meaningless.
 
Jonathan Edwards said:
The fine print seems to imply that the 'researchers' would have to be social science people with expertise in focus groups. They would need somewhere to advertise for volunteers - which ought to be through a support charity. Presumably there are academic units that bid for these things but the timeline is very tight.
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That was why I was thinking researchers could partner with a patient forum to help understand the area, the useful questions and issues and how to recruit along with the issues for patients in taking part in any form of focus groups (on line or not)
 
Suffolkres said:
25% Group Advocate could do this...?
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Also work was recently commissioned by Waveney CCG via Steven Wilkinson Dr Steven Wilkinson The Norfolk and Suffolk Primary and Community Care Research Office

"Agenda Item: 17Fran O’Driscoll, Deputy Director Commissioning NHSGYWCCGJSCC 19th February 2019

Page 3 of 3 Dr Wilkinson has also offered his support and assistance going forward.JSCC is asked to consider the review and agree the recommendations for changes
. 4. Evidence briefings.
Whilst awaiting NICE publication, it was agreed to seek out an objective view of service options based on an evidence review. The Norfolk and Suffolk Primary and Community Care Research Office have provided two evidence briefings to inform interim commissioning intentions ahead of the publication of NICE guidance. The briefings demonstrate that the current specification continues to meet NICE guidance and also highlights the differing commissioning arrangements across England.
There may be some changes which would be beneficial to make ahead of the publication of the updated NICE guidance e.g. resurrect CBT provision as many patients new to the service are requesting this type of support and to secure a North Norfolk location for clinics.
ECCH have been asked to explore these options and agreed to come back to commissioners by end February 2019.The evidence briefings are provided to initiate a clinical discussion on the findings and the future commissioning direction."
 
Jonathan Edwards said:
The fine print seems to imply that the 'researchers' would have to be social science people with expertise in focus groups. They would need somewhere to advertise for volunteers - which ought to be through a support charity. Presumably there are academic units that bid for these things but the timeline is very tight.
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If they have put these constraints on is it down to them or down to the community to find such researchers?

My concern is that they have some in the background waiting.
 
Andy said:
It's been like that since the start of the review process. I believe @Jonathan Edwards will confirm that we don't have firm evidence for encephalomyelitis (inflammation of the brain and spinal cord) in all, so encephalopathy (a general term that means brain disease, damage, or malfunction) would seem reasonable to include as a possibly more accurate term, so hardly meaningless.
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Trouble is you have to have an understanding of the difference and mostly people with ME do not care what you call it as long as it is understood there is a neurological problem and that it is understood and respected. Being so nity grity with the words we use leaves those suffering open to abuse.

When you have concision it is the symptoms that show the damage and it also goes for any encphalomyelitis. Stiff neck, clear fluid from the nose also brain inflammation symptoms include depression, anxiety, irritability, anger, memory loss, and fatigue. To keep saying that ME cannot be proved is wrong. Both have POTS as symptoms. Yet one is treated with respect and it is just amused inflammation and ME is not dealt with any respect.

If you do not have to have a test for concussion why would you need one for ME? We do know that many conditions like Lymes leaves you with ME and yet the test is unreliable but Lymes is still.

I have two sons 10 years apart. Youngest son from age of 8 showed all the signs above treated like... well words fail.
Oldest son get knocks over in the middle of the back his head clearly goes back and bangs on the ground. He stands upright straight away and finds it hard to breath. His care at AE is something to be proud of and the GP every caution taken.

If ME is what it takes to get that respect and considered treatment personally I do not care what technical term they use as long as the doctor understands ME and PEM. Just because we have not figured a test that shows it the symptoms speak for themselves?
 
I think with all the attention on conflicts of interest it would be extremely difficult for a service team to recruit a focus group. And I doubt half the committee would take it in any way seriously. After some discussions today I think the only people who might be in a position to recruit would be a research team with access to patients with known diagnostic characteristics that the team did not actually treat. Recruiting through charities runs into the problem of confirming diagnoses for the purpose of the project, which leads to confidentiality issues. It might be done but it is not immediately clear how.

I have a suspicion that this is not going to get off the ground. It may be that it is a response to a legitimate request that has ended up being too late to be practicable.
 
Jonathan Edwards said:
I think with all the attention on conflicts of interest it would be extremely difficult for a service team to recruit a focus group. And I doubt half the committee would take it in any way seriously. After some discussions today I think the only people who might be in a position to recruit would be a research team with access to patients with known diagnostic characteristics that the team did not actually treat. Recruiting through charities runs into the problem of confirming diagnoses for the purpose of the project, which leads to confidentiality issues. It might be done but it is not immediately clear how.

I have a suspicion that this is not going to get off the ground. It may be that it is a response to a legitimate request that has ended up being too late to be practicable.
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They were asked in the beginning to allow children and the severe to have a voice and I was personally assured this would happen. I also put forward that those that were at the stakeholder meetings should have a meeting at the end of each stage. This would have given full patient engagement and patient safety.

http://tillymoments.blogspot.com/2018/02/nice-engagement-workshop-2018.html
 
Jonathan Edwards said:
I think with all the attention on conflicts of interest it would be extremely difficult for a service team to recruit a focus group. And I doubt half the committee would take it in any way seriously. After some discussions today I think the only people who might be in a position to recruit would be a research team with access to patients with known diagnostic characteristics that the team did not actually treat. Recruiting through charities runs into the problem of confirming diagnoses for the purpose of the project, which leads to confidentiality issues. It might be done but it is not immediately clear how.

I have a suspicion that this is not going to get off the ground. It may be that it is a response to a legitimate request that has ended up being too late to be practicable.
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Sadly for paediatrics known diagnostic characteristics does not count for a lot - recent qualitative study on PEM highlighted that from symptoms described not all of the children had ME ( and this from the countries largest specialist children's unit). Paediatrics has conflated CF for so long that it has lost the plot.
 
Statement from Tymes Trust
STATEMENT BY TYMES TRUST

"Involving children and young people in developing a NICE Guideline on ME/CFS"

We have taken a long hard look at what initially appeared could be a researcher/patient led and controlled opportunity.

In practice, this is a full-on NICE owned and NICE structured, timed and controlled project, where the topics under discussion will be chosen by NICE, under a consultant that NICE has appointed.

The complex tendering process is, in fact, for the job of organising and administering a pre-designed project for one of NICE's external developers, hosted by the Royal College of Physicians, according to their rules eg "During the term, the Contractor shall comply with all reasonable instructions and requirements of the College" and "shall use reasonable endeavours to promote the interests of the College."

Tymes Trust does not work this way and would not wish to take this on. The lengthy tendering document contains a great deal more of such prescriptive detail which you may wish to read.

Tymes Trust is a totally voluntary charity and our volunteers are at full stretch, committed to their existing roles in serving the needs of children and young people with ME and their families. We believe that NICE must listen to the freely given views of these vulnerable young people in a way that is structured around them. We will be giving more information about this during ME Awareness Week.
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Code: 
https://www.facebook.com/tymestrust/posts/2412063575745437

 
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