Hello all, I hope everyone is ok. Thank you to everyone who has sent me supportive messages and emails. They are most appreciated. In addition, Thank you for your patience, whilst I had a short break to recharge.
Developments
- I have recently spoken to Healthwatch Leicester/Leicestershire - the campaign is currently being reviewed by their management to see if they can help us in any way. I am hoping to hear from them soon.
- In addition, I have spoken to my local MP's secretary with our paper proposal to see my local MP will re-consider her decision about taking the campaign to the houses of parliament. I am hoping to hear from her soon.
- Also, The Information Commissioner is assigning us a Case Worker for the Freedom of Information Act request against NICE - sadly, this can take a while but at least it is a step forward.
Over to you
I would like to propose that we start a committee. My original idea of having a Facebook group where we shared ideas, skills and information did not go to plan. Sadly, there was very little engagement in that group. Therefore, I would like to propose a group of possibly up to five people (Maybe more - including me) that meet via Zoom once a month. Your ideas and hard work will be accredited and thanked throughout this process but I will ensure that your confidentiality will be kept (We will discuss what you would like to be shared.) If you are interested, please email me claireswain19@outlook.com
Responses
Thank you to everyone who has sent me their MP's responses. I have kept the original copies for evidence especially for our media proposals in the future. The main theme I am finding with all of the responses is that they are not reading the paper protest properly. They are all providing blanket responses which include quotes on shared decision making and about how we will get support about coming off the medication we are curring using. It is like they are indirectly calling us Prescription drug addicts. They are not taking on board our side of the story and the distress we are in due to needing the medication and treatments for our quality of life. Some MP's are offering individual support in individual cases and I would urge you to take this offer if you are currently struggling to obtain medication or treatment you need for pain relief (Please remember the legislation in the paper protest).
Action for ME & The M.E Association
To those who suffer with ME. I have been contacting charities to see if they will support our cause. I understand that many people with ME/CFS can suffer from terrible chronic pain (not all). Anyway, NICE's specific guidelines for ME/CFS explain that if a person with this condition suffers from chronic pain to see a pain specialist but the only medication that they can have is antidepressants which link back to Chronic Pain NICE's Guidelines changes.
The person I spoke to at Action for ME was lovely and stated that she would pass it on to her team members (Please see below). Yet, Dr. Charles from The ME Association - well I will let you make your own mind up (Please see below). By the way, the links Dr. Charles provides are when the guidelines were at the proposal stage.
Action for ME
From: Questions
Sent: 23 June 2021 10:02
Subject: RE: Please Help us to Fight the Cruel Changes to National Institute for Health and Care Excellence (NICE) Chronic Pain Guidelines!
Hi Claire,
Thanks for your email. It looks like you are getting very organised. I’ve just signed your petition. I will forward your email to our policy and comms team members to see if we can help further, with the campaign and sharing on social media.
I hope this is helpful, but please do come back to us if you have any further questions.
Before I sign off, please can I ask, would you be willing to
• take a few minutes to complete a (very brief!) online questionnaire about how you have found this service, so we can use this to improve what we do?
Best wishes
Sally Ulph
Information and Support Officer
� 42 Temple Street, Keynsham BS31 1EH ৷� questions@actionforme.org.uk ৷ � 0117 927 9551
As part of the ME/CFS Biomedical Partnership, we’re leading
DecodeME, the world’s largest ME/CFS DNA study.
Register to take part at www.decodeME.org.uk
The ME Association
From: Claire Swain <claireswain19@outlook.com>
Sent: 22 June 2021 17:00
To: Helen Darling <helen.darling@meassociation.org.uk>
Subject: Please Help us to Fight the Cruel Changes to National Institute for Health and Care Excellence (NICE) Chronic Pain Guidelines!
Dear M.E Association
RE: Please Help us to Fight the Cruel Changes to National Institute for Health and Care Excellence (NICE) Chronic Pain Guidelines.
I emailed you a while ago regarding the proposed changes to the Chronic Pain NICE guidelines. You kindly stated that you would consider being a stakeholder for the proposed changes. Sadly, the changes have gone ahead and many of us with M.E and similar conditions are suffering because of it.
We are extremely distressed by the recent changes that were made by NICE regarding chronic pain (primary and secondary) in over 16s that was published on the 7th of April 2021.
Our side of the story is continuing to be Ignored. Many of us need pain relief medications and treatments to have a quality of life and to be able to have a level of function. Yet, we are being falsely labeled as prescription drug addicts.
We have been asking for help from NICE and MP’s. Yet, we are being dismissed, and our concerns are being Ignored.
We are in severe misery and are full of anxiety.
Please will you consider helping us?
Please find attached Paper Protest for further details.
Thank you for your time,
Best wishes,
Claire Swain
From: Charles Shepherd <charles.shepherd@meassociation.org.uk>
Sent: Wednesday, 23 June 2021, 11:07
To: claireswain19@outlook.com
Cc: Helen Darling
Subject: Re: Please Help us to Fight the Cruel Changes to National Institute for Health and Care Excellence (NICE) Chronic Pain Guidelines!
Dear Claire
Thanks for getting in touch with the MEA on this matter
I suspect that you may have missed our website statements on this new and very controversial pain management guideline from NICE:
https://meassociation.org.uk/2021/04/new-guideline-from-nice-on-chronic-pain/
As a member of the NICE guideline committee on ME/CFS I have also discussed this matter with NICE
If you check on the November draft of the new NICE guideline on ME/CFS, pain management in ME/CFS links to the NICE guideline on neuropathic pain and not to this one
Kind regards
Dr Charles Shepherd - Hon Medical Adviser, MEA
From: Claire Swain <claireswain19@outlook.com>
Sent: 23 June 2021 11:37
To: Charles Shepherd <charles.shepherd@meassociation.org.uk>
Cc: Helen Darling <helen.darling@meassociation.org.uk>
Subject: Re: Please Help us to Fight the Cruel Changes to National Institute for Health and Care Excellence (NICE) Chronic Pain Guidelines!
Dear Dr Charles,
Thank you for your email,
However, in the finalised guidelines that were published in April 2021 and after speaking to NICE myself. My understanding is that M.E is included as the diagnosis is classed as having no organic or structural cause. (not that I agree with that)
I would like to hear your thoughts when you have a chance.
Thank you for your time,
Best wishes
Claire
From: Charles Shepherd <charles.shepherd@meassociation.org.uk>
Sent: Wednesday, June 23, 2021 12:10:54 PM
To: Claire Swain <claireswain19@outlook.com>
Cc: Helen Darling <helen.darling@meassociation.org.uk>
Subject: Re: Please Help us to Fight the Cruel Changes to National Institute for Health and Care Excellence (NICE) Chronic Pain Guidelines!
Hi Claire
I can only repeat what I have already said.....
The reply we got from Paul Chrisp at NICE (included below) was very clear and the new NICE guideline on ME/CFS makes it clear that this pain guideline should not be used for pain management in ME/CFS
I'm not sure what else I can do here!
Regards
Charles Shepherd