Finally, today 29.10.2021, after all the ups and downs and silly deliberations, NICE have done the right thing, what they should have done in the beginning, they have published the new and updated guidelines for ME, which will hopefully be more fit for purpose than the outdated 2007 version.
NICE news …
Today NICE made the really important announcement that they have published their new ME/CFS guidelines.
Those who follow me regualarly will have read my letter to NICE when they announced their delay and their reply (see below).
Those with ME will know and understand what today’s announcement actually means for us …
To download your copy click ‘NICE ME/CFS guidelines’.
NICE announcement (20.10.21) … (please click and read the new guidelines). Long term, I intend to write a blog about them and break down / summarise the most important bits (for myself, yours may be different) …
background information …
12.08.2021 NICE announced the following …
The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.
Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.
NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.
We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.
In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.
I feel beyond devastated about this. I have emailed NICE and will share the email and any response later this week.
My letter to NICE (sent Tuesday 17th August, 2021) …
Dear NICE (or maybe not so nice),
I am writing to you to express my sheer and utter disappointment that you appear to be allowing the medical profession to question the guidelines that you have come up with relating to my condition ME. ME/CFS, which you will no doubt realise can be so severe that when a patient is treated incorrectly they can die. And, on a personal note, those so called professionals that forced the most famous, for want of a better word, two ME patients to do GET and then left them to die, in my opinion, these precious people were murdered by the medical professionals who got it wrong and today are still getting it wrong. You, NICE, need to stand up to them.
I have been ill with ME since 1983-84, and was fobbed off and messed around until 2001 when I was finally diagnosed. However, this was much too little and too many years too late. To be told I now needed to learn to live within my new means.
Except for a few blood tests and some CBT, from which I was appallingly discharged due to rearranging too many appointments and told once I’d fixed the problem I might be allowed back! Read that again … yes I was sent to them for a condition that they used against me in order to discharged me. And then said when I fix it I may be able to use their services, which I obviously won’t need if I could fix the problem.
I am now severe and cannot even take a bath weekly, or cook, or look after myself. I have absolutely no medical care, unless I pay. With what? I cannot earn. I have been discarded and abandoned so many times by the medical professionals I went to for help, and my only hope was in the new and better ‘fit for purpose’ guidelines. Yet, now I feel abandoned all over again.
Please, please do the job you are paid to and publish the guidelines that you have come up with in the your investigations spanning over four years and tell the NHS and other professionals their job is to comply with them not behave like naughty children and try to sidestep their responsibility because they appear to be, or feel, powerful against and over the poorly and the very very sick.
I trust you will read this and respond too because my heart is breaking at the thought of another letdown by those I put my trust.
~ denise ~
~ fragmented.me ~
Live with Passion 🌻🌻🌻…
Their response (definitely a standard letter that they sent to every single person who wrote to them regarding this matter) (also this was not received until Monday, 13th September, 2021) …
Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding the pause to the publication of our new guideline on the diagnosis and management of myalgic encephalomyelitis (ME)/chronic fatigue syndrome.
We are aware that our decision to pause publication has been difficult for people with ME/CFS and their families. However, we really want to ensure that the guideline makes a difference for patients, and unfortunately a pause to publication was necessary in light of feedback that we received from some key groups.
Changing clinical practice and clinical attitudes is one of the most challenging parts of our role. To make a real difference, guidelines need to be supported by all relevant stakeholders, so taking some extra time now to bring everyone together is an important step.
A roundtable discussion will be held in October to better understand the issues that were raised, demonstrate the robust way the guideline has been developed, and determine how we can gain support for the guideline to ensure effective implementation. The meeting will have an independent chair and will include representatives from patient organisations and charities, relevant professional societies and from NHS England and NHS Improvement, NICE and the guideline committee.
I would like to assure you that we recognise the importance of the new guideline for patients and their families, and we are committed to finding a way forward to publish a guideline that will have the support of people living with ME/CFS, the people who care for them and the professionals who treat them.
… hope is being able to see that there is light despite all of the darkness …
… desmond tutu …
a personal concluding note …
I sincerely hope that this is the beginning of some very much needed changes for us with ME … watch this space …
Please feel free to contact me to share your outcomes or with any questions you may have.