Thanks. Just looked at the other thread. It briefly crossed my mind that there was more to the question than it appeared, because it was strangely worded, and it certainly seems he's aware of ME.
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UK NICE guideline consultation open 10 July 2017 until Friday, 21 July 2017.
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Jo Best
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Thanks. I laughed when I first read the question, so that's a relief - at least let's hope so, as you never can quite tell, where the behind the scenes shenanigans relating to this disease are concerned.
Will watch this space on Sally's thread: http://forums.phoenixrising.me/inde...fast-great-new-development.51841/#post-857250
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I haven't any insight into why he asked to the question, but in general I've seen him involved in debates in which he seemed reasonable, and concerned about the powerless. His voting record for instance on welfare
https://www.theyworkforyou.com/mp/13864/jim_shannon/strangford/votes#welfare ,
goes against much conservative dogma, such as him being for increases in amounts paid instead of cuts, so has shown the capacity for independent thought and action.
A strange question coming from him, but maybe he's been 'nudged' by someone with influence and not been told all the information?
Large Donner
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Is he possibly attempting to show the government as a bunch of lost lunatics knocking on peoples doors to check their exercise records?
Jo Best
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Yes, my guess on reading that and thinking on it a bit more is that it is a devil's advocate style leading question, for example, "what steps" (wonder if that pun was intended) could imply if it includes coercion, sectioning under mental health or child protection measures in view of the increasing suspicion and number of accusations of FII.
charles shepherd
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I agree that this is a very strange question to ask - especially as I have met Jim Shannon MP over in Northern Ireland at a fundraising event and found him to be a pleasant and reasonably well informed MP when it comes to ME/CFS
I wonder if Joan McParland from the NI support group knows what is going on here…so I will ask her!
CS
Esther12
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As this was just after media coverage of GETSET, wasn't it likely prompted by that?
Jo Best
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You might have missed the post linking to this thread and comment on this by @Keela Too - Sally's thread: http://forums.phoenixrising.me/inde...fast-great-new-development.51841/#post-857250
See above @charles shepherd
I rather suspect he is being a little bit clever.
RogerBlack
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Occam's razor alas.
Coverage in popular press -> 'Oh - CFS, I've heard about that' -> 'brief glance at NICE guidelines (perhaps)' -> 'I know what exercise is, and it makes me well, so raising something that might make CFS patients well makes me look good'.
You need to get a _lot_ deeper than just 'caring about the plight of people with CFS' to realise that GET and CBT are evidence-less.
Especially when there are several evidence sources giving highly biased reports.
Jo Best
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@RogerBlack this is what Sally said on another thread, so unless Jim Shannon has been knobbled since the general election, it seems it might have been a deliberately straight question to raise the issue prior to the NICE consultation.
Jo Best
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By the way, there was a written government response (same old blah) to a petition about treatment policy for ME that had closed early (3rd May) because of the general election, and it mentions the quesion of NICE update.
Debate in Parliament the absence of an effective policy for the treatment of M.E: https://petition.parliament.uk/petitions/190618
ME (Myalgic Encephalomyelitis) a physical, neurological illness, but remains untreated except with psychotherapy - a failed policy based on the views of discredited psychiatrists who deny that ME exists. A non-psychiatric policy of ME research and treatment would end this ongoing medical scandal.
Government responded
The Government accepts the World Health Organisation’s classification of CFS/ME as a neurological condition of unknown origin.
Many potential causes for CFS/ME – including neurological, endocrine, immunological, genetic, psychiatric and infectious – have been investigated, but the variety of symptoms and the range of their severity cannot be fully explained. As the symptoms of CFS/ME resemble those of other forms of debilitating illness and there is no test with which to make an accurate diagnosis, it is not always easy to diagnose single cases of the condition. Diagnosis relies on clinical observation of symptoms by healthcare professionals.
For those affected, it is important that they receive the right diagnosis and that the treatment and support they receive are tailored to their symptoms, needs and circumstances. NHS clinical commissioning groups are responsible for ensuring that local people affected by CFS/ME are able to access appropriate care. To support local services in the diagnosis, treatment and support of patients with CFS/ME, in 2007 the National Institute for Health and Care Excellence (NICE) published a clinical guideline on the management of CFS/ME in adults and children, which sets out best practice on the care, treatment and support of patients with CFS/ME. NICE is the independent expert body responsible for developing robust, evidence based guidance for the NHS to design services that are in line with the best available evidence.
The NICE guideline on CFS/ME recommends treatments, such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET) approaches, that have the clearest research evidence of benefit. However, it does not detract from the right of patients to be involved in decisions about their treatment. The guideline recognises there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want. Instead, it emphasises a collaborative relationship between clinician and patient, that treatment and care should take into account personal needs and preferences, and that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme. It is also important to clarify that the effectiveness of CBT as a treatment for CFS/ME does not make assumptions about the nature of the illness. CBT is used to help and support people through physical illnesses and is used widely to manage many medical conditions such as arthritis, heart disease and chronic pain.
NICE last reviewed the guidance with its stakeholders, including CFS/ME charities, in 2013. The review found no update was required and at that time no major ongoing studies or research were identified as due to be published in the next three to five years. The full guideline may be viewed on the NICE website at the following link: www.nice.org.uk/guidance/cg53
Recently, NICE has been made aware of three US reports that have indicated there are likely to be changes in diagnostic criteria that could have an impact on the CFS/ME guideline recommendations and decided to start a check of whether the guideline needs updating. NICE has also been made aware of new information about the 2011 PACE trial, which highlighted CBT and GET as safe and effective treatment options for people who have mild or moderate forms of CFS/ME. At the time, NICE concluded that the results of the trial supported its existing guidance, but it will now also consider that new information as part of its check of the guidance. NICE plans to set out its decision regarding an update shortly. More information can be found at the following link:www.nice.org.uk/guidance/cg53
Department of Health
Source: https://petition.parliament.uk/petitions/190618
Debate in Parliament the absence of an effective policy for the treatment of M.E: https://petition.parliament.uk/petitions/190618
ME (Myalgic Encephalomyelitis) a physical, neurological illness, but remains untreated except with psychotherapy - a failed policy based on the views of discredited psychiatrists who deny that ME exists. A non-psychiatric policy of ME research and treatment would end this ongoing medical scandal.
Government responded
The Government accepts the World Health Organisation’s classification of CFS/ME as a neurological condition of unknown origin.
Many potential causes for CFS/ME – including neurological, endocrine, immunological, genetic, psychiatric and infectious – have been investigated, but the variety of symptoms and the range of their severity cannot be fully explained. As the symptoms of CFS/ME resemble those of other forms of debilitating illness and there is no test with which to make an accurate diagnosis, it is not always easy to diagnose single cases of the condition. Diagnosis relies on clinical observation of symptoms by healthcare professionals.
For those affected, it is important that they receive the right diagnosis and that the treatment and support they receive are tailored to their symptoms, needs and circumstances. NHS clinical commissioning groups are responsible for ensuring that local people affected by CFS/ME are able to access appropriate care. To support local services in the diagnosis, treatment and support of patients with CFS/ME, in 2007 the National Institute for Health and Care Excellence (NICE) published a clinical guideline on the management of CFS/ME in adults and children, which sets out best practice on the care, treatment and support of patients with CFS/ME. NICE is the independent expert body responsible for developing robust, evidence based guidance for the NHS to design services that are in line with the best available evidence.
The NICE guideline on CFS/ME recommends treatments, such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET) approaches, that have the clearest research evidence of benefit. However, it does not detract from the right of patients to be involved in decisions about their treatment. The guideline recognises there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want. Instead, it emphasises a collaborative relationship between clinician and patient, that treatment and care should take into account personal needs and preferences, and that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme. It is also important to clarify that the effectiveness of CBT as a treatment for CFS/ME does not make assumptions about the nature of the illness. CBT is used to help and support people through physical illnesses and is used widely to manage many medical conditions such as arthritis, heart disease and chronic pain.
NICE last reviewed the guidance with its stakeholders, including CFS/ME charities, in 2013. The review found no update was required and at that time no major ongoing studies or research were identified as due to be published in the next three to five years. The full guideline may be viewed on the NICE website at the following link: www.nice.org.uk/guidance/cg53
Recently, NICE has been made aware of three US reports that have indicated there are likely to be changes in diagnostic criteria that could have an impact on the CFS/ME guideline recommendations and decided to start a check of whether the guideline needs updating. NICE has also been made aware of new information about the 2011 PACE trial, which highlighted CBT and GET as safe and effective treatment options for people who have mild or moderate forms of CFS/ME. At the time, NICE concluded that the results of the trial supported its existing guidance, but it will now also consider that new information as part of its check of the guidance. NICE plans to set out its decision regarding an update shortly. More information can be found at the following link:www.nice.org.uk/guidance/cg53
Department of Health
Source: https://petition.parliament.uk/petitions/190618
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Feels a bit naff to quote myself, but...
I hope that my commentary and particularly the figure and table from my commentary on patient surveys might be useful to people putting together submissions to NICE. The figure and table give a brief, visual overview of UK patient survey data 2001-2015. The figure and table can be downloaded separately here:
http://journals.sagepub.com/doi/figure/10.1177/1359105317703787?
The reference for my paper is Kirke, KD (2017) PACE investigators' response is misleading regarding patient survey results Journal of Health Psychology. Published online ahead of print 11 May 2017. DOI: https://doi.org/10.1177/1359105317703787
and the full paper is here:
(pdf) http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787
(online version) http://journals.sagepub.com/doi/full/10.1177/1359105317703787
I'm aware that NICE regards patient surveys as biased, but I think there is a strong case to be made that their consistency makes them compelling, and that more recent surveys document as clearly as they can the demographic information of respondents, allowing us to see where they are and are not representative of the ME population. RCTs are biased too, just in different ways and directions, e.g. often towards a milder subset.
I hope this is helpful!
I hope that my commentary and particularly the figure and table from my commentary on patient surveys might be useful to people putting together submissions to NICE. The figure and table give a brief, visual overview of UK patient survey data 2001-2015. The figure and table can be downloaded separately here:
http://journals.sagepub.com/doi/figure/10.1177/1359105317703787?
The reference for my paper is Kirke, KD (2017) PACE investigators' response is misleading regarding patient survey results Journal of Health Psychology. Published online ahead of print 11 May 2017. DOI: https://doi.org/10.1177/1359105317703787
and the full paper is here:
(pdf) http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787
(online version) http://journals.sagepub.com/doi/full/10.1177/1359105317703787
I'm aware that NICE regards patient surveys as biased, but I think there is a strong case to be made that their consistency makes them compelling, and that more recent surveys document as clearly as they can the demographic information of respondents, allowing us to see where they are and are not representative of the ME population. RCTs are biased too, just in different ways and directions, e.g. often towards a milder subset.
I hope this is helpful!
AndyPR
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Jo Best
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@Karen Kirke I forgot to thank you for that - so thank you!
I thought this was excellent and on not seeing this comment nor finding a stand alone thread I have set one up. I think it deserves a standalone thread. Would you like me to keep it or delete it?
AndyPR
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Responses to NICE from IiME
http://www.investinme.org/IIMER-Newslet-17-07-04.shtml
and MEAction
http://www.meaction.net/2017/07/23/nice-2017-response/
http://www.investinme.org/IIMER-Newslet-17-07-04.shtml
and MEAction
http://www.meaction.net/2017/07/23/nice-2017-response/
Hope 4 ME & Fibro NI response:
http://hope4mefibro.org/wp-content/uploads/2017/07/Hope-4-ME-Fibro-NI-comments-form-2.pdf
http://hope4mefibro.org/wp-content/uploads/2017/07/Hope-4-ME-Fibro-NI-comments-form-2.pdf