Arisoned
Established Member (Voting Rights)
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UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022
- Thread starter Andy
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I am not comfortable with anonymity.
Transparency seems particularly important in this situation given the history of how decisions have been made about us, without us.
That said, there can be good reasons for it in some situations too. Just not sure this is one of them.
Transparency seems particularly important in this situation given the history of how decisions have been made about us, without us.
That said, there can be good reasons for it in some situations too. Just not sure this is one of them.
Suffolkres
Senior Member (Voting Rights)
There is considerable unease within the ME Community it would appear....
It started with the NICE Roundtable for me.......
Now there seems to be a petition which is now started to go round asking some important questions, which I think it is fair to ask.
'Dear Lucy Chappell and Rt Hon Sajid Javid
re ME/CFS roundtable attendees
We have been following developments since Sajid Javid announced his plan on 12 May 2022, to co-chair a roundtable with his Department’s Chief Scientific Adviser, Professor Lucy Chappell, to bring together experts on ME/CFS, including people with lived experience to discuss what needs to happen next, with the greatest interest. It has been very encouraging to see a first meeting take place so soon after the original announcement. As people with lived experience of the illness, at all levels of severity throughout an extremely unhappy period in the history of the disease, we are very concerned that two British physicians have yet to be invited to contribute their expertise. Dr William Weir and Dr Nigel Speight both have our full trust and confidence, because of their extensive clinical experience with the disease and because of their understanding of the existing barriers to recognition and treatment of its pathophysiology in the UK. They are uniquely experienced throughout the devolved nations in medical practice with ME/CFS and in particular with the severe and very severe form of the illness. We are confident that there is no substitute anywhere in the world for their knowledge of how health and social care have each prevented vital treatment from being provided when it was needed. They also understand the way in which routine hospital treatment should be provided for people with a diagnosis of ME/CFS so as to avoid causing further harm to already unwell patients.
We are particularly concerned that your objective, of including the 25% who are very severely affected by ME/CFS, should be met. In our experience, the charities with which you are already in contact have not had the reach to be able to include the most vulnerable in their activities. Consequently, they are unable to accurately represent their needs, which do not ‘fluctuate’ and have been abandoned to family care – or no care at all. As you know, people have died because of it. We wish to support your efforts to change this in whatever way we can. For this reason, we urge you to include Dr Weir and Dr Speight in all future meetings to ensure what is known about this illness is not excluded from the discussion. Please let us know you will do this by reply.'
I have been increasingly concerned of how certain smaller charities and groups/organisations have been/are being sidelined, not invited to the 'table', whos effort and work over decades has built the foundation for the current away forward.
This seems it is all being "done for us" by organisations, and people without any consensus or transparency and openness regrading the process of those 'nominated'.
Nominated by whom I have to ask?
There appears to be a rather unpleasant undercurrent which I have yet to put my finger on.....
It started with the NICE Roundtable for me.......
Now there seems to be a petition which is now started to go round asking some important questions, which I think it is fair to ask.
'Dear Lucy Chappell and Rt Hon Sajid Javid
re ME/CFS roundtable attendees
We have been following developments since Sajid Javid announced his plan on 12 May 2022, to co-chair a roundtable with his Department’s Chief Scientific Adviser, Professor Lucy Chappell, to bring together experts on ME/CFS, including people with lived experience to discuss what needs to happen next, with the greatest interest. It has been very encouraging to see a first meeting take place so soon after the original announcement. As people with lived experience of the illness, at all levels of severity throughout an extremely unhappy period in the history of the disease, we are very concerned that two British physicians have yet to be invited to contribute their expertise. Dr William Weir and Dr Nigel Speight both have our full trust and confidence, because of their extensive clinical experience with the disease and because of their understanding of the existing barriers to recognition and treatment of its pathophysiology in the UK. They are uniquely experienced throughout the devolved nations in medical practice with ME/CFS and in particular with the severe and very severe form of the illness. We are confident that there is no substitute anywhere in the world for their knowledge of how health and social care have each prevented vital treatment from being provided when it was needed. They also understand the way in which routine hospital treatment should be provided for people with a diagnosis of ME/CFS so as to avoid causing further harm to already unwell patients.
We are particularly concerned that your objective, of including the 25% who are very severely affected by ME/CFS, should be met. In our experience, the charities with which you are already in contact have not had the reach to be able to include the most vulnerable in their activities. Consequently, they are unable to accurately represent their needs, which do not ‘fluctuate’ and have been abandoned to family care – or no care at all. As you know, people have died because of it. We wish to support your efforts to change this in whatever way we can. For this reason, we urge you to include Dr Weir and Dr Speight in all future meetings to ensure what is known about this illness is not excluded from the discussion. Please let us know you will do this by reply.'
I have been increasingly concerned of how certain smaller charities and groups/organisations have been/are being sidelined, not invited to the 'table', whos effort and work over decades has built the foundation for the current away forward.
This seems it is all being "done for us" by organisations, and people without any consensus or transparency and openness regrading the process of those 'nominated'.
Nominated by whom I have to ask?
There appears to be a rather unpleasant undercurrent which I have yet to put my finger on.....
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Andy
Retired committee member
Tweet from the Department of Health and Social Care
"ME (chronic fatigue syndrome) affects at least 250,000 people in the UK & can be a debilitating condition. @sajidjavid recently met experts & charities to discuss how we support biomedical research to improve understanding of ME/CFS."
There is a short video embedded in the tweet (the background music is quite loud, so warning to sound sensitive folks)
"ME (chronic fatigue syndrome) affects at least 250,000 people in the UK & can be a debilitating condition. @sajidjavid recently met experts & charities to discuss how we support biomedical research to improve understanding of ME/CFS."
There is a short video embedded in the tweet (the background music is quite loud, so warning to sound sensitive folks)
Suffolkres
Senior Member (Voting Rights)
Update on DHSC Round table rep
Poignant- Maeve O Neill's mum.........
sarah
@swastrosarah
please join #pwME #CloseToME in endorsing Dr William Weir and Dr Nigel Speight as essential participants at all MECFS round table meetings (chaired by Sajid Javid & Lucy Chapell at DHSC). Sign with name, location and years with ME. DM if its easier https://docs.google.com/document/d/1hSldVxLdoo1UCbARwBrvm3qscSv5EBrt/edit?usp=sharing&ouid=112640282798328988115&rtpof=true&sd=true
6:07 PM · Jun 14, 2022·Twitter Web App
sarah
To my mind we need severely affected robustly represented across all the work.
Jun 14
Replying to
@swastrosarah
My DMs should be open and anyone should be able to comment on the document https://docs.google.com/document/d/1hSldVxLdoo1UCbARwBrvm3qscSv5EBrt/edit?usp=sharing&ouid=112640282798328988115&rtpof=true&sd=true
Also, to reassure; re 25% representation.
From H, member of S4ME-
'Feel free to share the info that a severely affected rep is on this working group. Hopefully the names of all are are will be made public, but until we are clear about this please don't give out the name....
Dr Weir attended the APPG reception on behalf of the 25% ME Group and understood that he would be asked to be part of a ‘scientific group’. (I/we) am hoping he is now chasing this up as he seems to have dropped off the DHSC radar...'
Andy
Retired committee member
Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review
"Further to our recent statement regarding major UK announcements, the above presentation provides the solution to concerns about new DHSC ME/CFS Delivery Planning mechanisms and final implementation. Current glass ceilings will limit success of this new process and perpetuate likelihood of future frontline failures. Durable outcomes are needed that can survive current and future processes. Legitimacy and public health outcomes both depend on this durability. Working Groups must be decisively required to take a regulatory compliance approach to resolve these limits.
Merely documenting needs, mandating staff training and hoping for behavioural change will not suffice. Succeeding at scale will require specific and enforceable behavioural change that addresses normalised rule breaking in this field.
We offer a simple 4-Point obligations, rights, risks and liabilities focused approach to achieve this. Ensuring that the Working Groups consider every ME problem and solution in that 4-Point framework will:"
https://doctorswith.me/normalised-medical-rule-breaking-and-the-uk-dhsc-me-cfs-review/
This post has been copied and discussion of the video moved to this thread
"Further to our recent statement regarding major UK announcements, the above presentation provides the solution to concerns about new DHSC ME/CFS Delivery Planning mechanisms and final implementation. Current glass ceilings will limit success of this new process and perpetuate likelihood of future frontline failures. Durable outcomes are needed that can survive current and future processes. Legitimacy and public health outcomes both depend on this durability. Working Groups must be decisively required to take a regulatory compliance approach to resolve these limits.
Merely documenting needs, mandating staff training and hoping for behavioural change will not suffice. Succeeding at scale will require specific and enforceable behavioural change that addresses normalised rule breaking in this field.
We offer a simple 4-Point obligations, rights, risks and liabilities focused approach to achieve this. Ensuring that the Working Groups consider every ME problem and solution in that 4-Point framework will:"
https://doctorswith.me/normalised-medical-rule-breaking-and-the-uk-dhsc-me-cfs-review/
This post has been copied and discussion of the video moved to this thread
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adambeyoncelowe
Senior Member (Voting Rights)
I think the names will be released when the DHSC signs it off. They did with the professional members of the RT; it just took time.
Personally, I think all patient reps for these sorts of things should be available publicly, for transparency purposes, except in certain circumstances.
That said, my family has already been doxxed by neo-Nazis and random weirdos, so I may have a thicker skin for being on the public eye than most.
Personally, I think all patient reps for these sorts of things should be available publicly, for transparency purposes, except in certain circumstances.
That said, my family has already been doxxed by neo-Nazis and random weirdos, so I may have a thicker skin for being on the public eye than most.
Discussion of the Doctors with ME video has been moved to the Doctors with ME thread in order to keep the discussion in one place.
I'm hoping what he has started will continue and I think there is more understanding now with the research funders.
Agreed. But there’s also guidelines implementation……
Binkie4
Senior Member (Voting Rights)
Prescient comment by @CRG early in June "Great work on getting Ed Davey to write to Kamal - it's important that both Kamal and Javid are the focus of continuing polite questioning -it's quite possible that Kamal would be in post longer than Javid."
https://www.s4me.info/threads/uk-pa...id-javid-12-may-2022.27591/page-8#post-422051. post #159
Well it's happened. I never thought it would be so soon. Such a blow. There is nothing that replaces personal knowledge of ME. People cannot believe it
( the illness) is as bad as it is unless they have actually seen it.
https://www.s4me.info/threads/uk-pa...id-javid-12-may-2022.27591/page-8#post-422051. post #159
Well it's happened. I never thought it would be so soon. Such a blow. There is nothing that replaces personal knowledge of ME. People cannot believe it
( the illness) is as bad as it is unless they have actually seen it.
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Jonathan Edwards
Senior Member (Voting Rights)
This seems to me quite a good outcome. Javid was a good person to get an appropriate ME advisory group together but having said that he did not think the NHS needed any more money I cannot see how his continuation in post was going to get anything done!
Cheesus
Established Member (Voting Rights)
His successor won't be any better in that regard. I guarantee it.
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Saz94
Senior Member (Voting Rights)
Yeah but let’s be honest none of the other candidates are going to fund the NHS any better are they
Suffolkres
Senior Member (Voting Rights)
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