NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

I'm not sure whether this information has been reviewed by those members here who are on the NICE committee, but I have attached the CFS/ME guidance given in the DWP 'a-z of medical conditions' that was (possibly still is) used for assessing DLA. Needless to say, it gives the completely wrong information on M.E., so I wanted to ensure it gets considered in relation to getting NICE guidelines that can correct this misinformation.

The DWP also recommend that assessors look at NHS Choices for information about CFS/ME if they need to learn more about the condition in order to assess a claimant's care needs.
 

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adambeyoncelowe said:
I've replied to hopefully clarify. What NICE doesn't want is anecdote (John Smith said...) but you can pool survey data (17/20 patients said...). You can even say, '17/20 patients said... Comments included...' So long as it's not n=1, basically.
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@adambeyoncelowe @Amw66 This is the response I received (to clarify I was the one who posted that on Twitter):
callforevidence.JPG
 
I have put up a poll on Twitter and will send any results to cfs@nice.org.uk along with the comments I receive in relation to the positive or negative results of "interventions" people have received.
It's worth a try, I'm not sure what response I'll get. It's a basic poll. As said in the e-mail response I received they are "looking for evidence that explores and evaluates people's experience of interventions for ME/CFS"
 
Xalexon said:
I have put up a poll on Twitter and will send any results to cfs@nice.org.uk along with the comments I receive in relation to the positive or negative results of "interventions" people have received.
It's worth a try, I'm not sure what response I'll get. It's a basic poll. As said in the e-mail response I received they are "looking for evidence that explores and evaluates people's experience of interventions for ME/CFS"
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Could I suggest that people be allowed to send their comments to you privately? Not everyone wants to post these in a public fashion.
 
@adambeyoncelowe
this is a transcript of a talk Julia Newton did in 2017;
many references to studies done on cardiac abnormalities in ME/CFS patients plus exercise testing etc. Possibly a number of them have already been put forward but might be worth a quick read(?)
https://www.meassociation.org.uk/wp...anscript-Standing-up-for-Fatigue-Nov-2017.pdf

eta: also this list
Summary of recent significant findings in ME-cfs research - Updated Feb 2019.docx
https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o
 
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Sly Saint said:
@adambeyoncelowe
this is a transcript of a talk Julia Newton did in 2017;
many references to studies done on cardiac abnormalities in ME/CFS patients plus exercise testing etc. Possibly a number of them have already been put forward but might be worth a quick read(?)
https://www.meassociation.org.uk/wp...anscript-Standing-up-for-Fatigue-Nov-2017.pdf

eta: also this list
Summary of recent significant findings in ME-cfs research - Updated Feb 2019.docx
https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o
Click to expand...
Thanks. Hypothesis is probably less of interest to NICE than clinical trials but I'll certainly look at everything.
 
Jonathan Edwards said:
I assume this is all a response from the NICE data gatherers.
My impression was that they are taking things seriously. It is so easy for good intentions to turn into handle turning but like you I am getting more hopeful that sense will prevail.
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So true but what has been missing for so long is the lived reality of the journey and I think you said awhile back that people get on here to look, listen and hopefully hear and learn, and as I have said before the most important thing is our conversations.

Working through the complexity and hearing what the problems are is of the utmost importance as it puts everything in the lived experience and that is what the patient has to deal with. However, it is the most difficult thing for researchers to look at. They seem to be doing a grand job of understanding this, so here is hoping.

It helps when you listen to these http://voicesfromtheshadowsfilm.co.uk/dialogues-project/

Excellent job Jonathan and everyone else. For me it would be powerful if those points raised formed the bedrock of the research of the future - tracking the PEM cycle for individuals is vital.

This afternoon we had our second phone meeting with the researchers and I came to realise the importance of those points I raised above and earlier in the day. In the NICE guidelines it states that on going and careful monitoring of the situation is needed and that harms should be reported of treatments; CBT is no exception and has cased more harm than anyone appreciates. If that monitoring had been done as intended in those guidelines and carried out in research, my son would not be paying the heavy price he has.

The harm of CBT needs to be recognised and acted upon and understood as a passive, aggressive, gaslighting that is more akin to torture than to treatment. As I write this I know WiiFit is being used on very young children as though no possible harm could ever be done. To tell a child and burden that child with you are just imagining the pain is more than it is. For that child to take it and internally believe they are unable to cope with so called "normal pain", when in reality the intensity is more like they have pushed their body beyond its endurance and capacity well it floors me every time. We have now reached a stage where we can and do dismiss their reality. We need to turn that around and start to listen.
 
Can anyone locate the online version of Annex 3 to the CMO's report on CFS/ME 2002?

The main report is available on the MEA website but this link does not have the annexes.
https://www.meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf

Annex 3 is the patient evidence and includes the sentence
'Although the results cannot necessarily be generalized beyond this group, the data clearly indicate that the York review results do not reflect the full spectrum of patients' experience'

ie it is not just recent survey's that show that CBT/GET don't work
 
I can’t keep up with the forum lately, including this thread, due to cognitive issues and life, so maybe I’m concerned for no reason but...

This thread is now quite long and many people have posted research here that they think NICE should consider. I’m worried that people are doing that rather than sending the info to NICE.

As far as I know no member(s) have offered to do that job for anyone else or for a collective S4ME submission (which is fine as we all have our limits and priorities!).

If that’s the case could that be highlighted and brought to people’s attention in some way?

@Andy @Hutan @Trish
 
Skycloud said:
I can’t keep up with the forum lately, including this thread, due to cognitive issues and life, so maybe I’m concerned for no reason but...

This thread is now quite long and many people have posted research here that they think NICE should consider. I’m worried that people are doing that rather than sending the info to NICE.

As far as I know no member(s) have offered to do that job for anyone else or for a collective S4ME submission (which is fine as we all have our limits and priorities!).

If that’s the case could that be highlighted and brought to people’s attention in some way?

@Andy @Hutan @Trish
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In another thread @Gecko has confirmed that MEAction UK will be making a submission and that this thread has been useful to highlight items for inclusion.
 
Skycloud said:
I can’t keep up with the forum lately, including this thread, due to cognitive issues and life, so maybe I’m concerned for no reason but...

This thread is now quite long and many people have posted research here that they think NICE should consider. I’m worried that people are doing that rather than sending the info to NICE.

As far as I know no member(s) have offered to do that job for anyone else or for a collective S4ME submission (which is fine as we all have our limits and priorities!).

If that’s the case could that be highlighted and brought to people’s attention in some way?

@Andy @Hutan @Trish
Click to expand...

I've posted forum links and academic references here, hopefully to bring them to the attention of the members on the NiCE guidelines committee, as per the purpose of this sub-forum:

https://www.s4me.info/threads/purpose-of-this-subforum.7173/
 
Colette said:
Can anyone locate the online version of Annex 3 to the CMO's report on CFS/ME 2002?

The main report is available on the MEA website but this link does not have the annexes.
https://www.meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf

Annex 3 is the patient evidence and includes the sentence
'Although the results cannot necessarily be generalized beyond this group, the data clearly indicate that the York review results do not reflect the full spectrum of patients' experience'

ie it is not just recent survey's that show that CBT/GET don't work
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The National Archives was my only thought of a possible place they'd be, but no luck. - would be good to know if you do find anywhere.
 
Suffolkres said:
http://nandsme.blogspot.com/p/patient-survey.html

All Party Parliamentary Group on ME
In March 2010 part of our survey was included in the All-Party Parliamentary Group on ME 'Inquiry into NHS Service Provision for ME/CFS' (p6).

The APPG commented on page 8 of their report:
'While the APPG recognises that it is impossible for all treatments in any disease area to be side-effect free, if CBT and GET were licensed medication, this number of patients claiming devastating side effects would undoubtedly have led to a review by NICE. The same standards should apply to CBT and GET.' It is vital to provide information regarding potential benefits and adverse effects of interventions so that patients can make informed choices regarding their care.
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The link to the APPG report is just taking me to a resources page on Action for ME's website. Anyone got the link to the actual report handy? (Doubt the report itself really fits the criteria but may mention other surveys that have been done.)
 

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