UPDATE ON UK HEALTH CLINICS FOR PATIENTS WITH ME / CFS

 ME/CFS UK HEALTH CLINIC SERVICES UPDATE ( + Long Covid )

This is an information update on UK clinics that provide health services for patients with ME/CFS and whether they are compliant with following the new health guidelines or not.

ME/CFS Myalgic Encephalomyelitis which is also called Chronic Fatigue Syndrome is a disease that affects many people and normally occurs after an infection or occasionally following an immune event . My family is affected by this illness and so I try to keep up to date with developments.
Some doctors now feel that there are overlaps with symptoms of Long Covid too, some UK clinics and same staff see both ME/CFS and Long Covid patients.

This is to provide some updated information since the NICE guidelines for the treatment of patients ME/CFS was revised in the UK in 2021 and I want to highlight that patients in many locations are still at risk. The new guidelines NG206 published 29 October 2021 can be found here.

www.nice.org.uk/guidance/ng206

Patients with ME/CFS in the UK were given treatments under instruction from the previous official health guidelines that have now been formally recognised as harmful. The new guidelines have now done a complete U turn and specifically state that the treatments that involved graded exercise or incremental increases in activity that were routinely prescribed in the past now have to stop because it causes symptoms to worsen increasing disability due to post exertional malaise / symptom exacerbation.

That is the good news, the bad news is that some of the medical royal colleges opposed this .Some members of them are known to have a conflict of interest. It is a muddle.

So the current situation is one of flux.

Charities for ME/CFS patients are asking people to report which clinics are still non-compliant that continue to offer outdated harmful treatments.

The charities include the ME Association and Action For ME amongst others.

The charities are in the process of contacting the offending clinics and reminding them of their duty to follow the new guidelines.

There is also a newly formed cross party parliamentary group which aims to implement the new guidelines . The situation of many clinics refusing to follow the updated guidelines is unprecedented, which is why the group had to be set up. It was set up by the former Health Secretary Sajid Javid because he has a relative with ME/CFS.

The deputy chair of the 2021 NICE guideline committee who produced the new treatment protocol raised concerns officially in the House of Lords some months ago stating that it would be important to have records of patient harm . Baroness Ilora Finlay ( deputy chair ) has been copied in on charity correspondence sent to clinics that wrongly offer harmful treatment.

I thought I would post details of some locations in the UK where clinics have received letters of complaint for non-compliance and include links to the full letter. This is an ongoing process as some clinics are still resisting the new guidelines despite being contacted.

I believe that the organisation Forward ME have also contacted various clinics with mixed success.

Here are links to letters from the ME Association to offending clinics. The ME Association are working alongside the NHS and other officials with this.

Each letter is unique and points out the neglect , patient harm and dereliction of duty specific for that particular area and highlights what needs to changed and withdrawn in their patient information pages and clinical practice. Some have been received well and changes agreed, others less so.



20 July - Torbay and South Devon

meassociation.org.uk/2022/07/mea-writes-to-torbay-and-south-devon-me-cfs-service-about-their-fact-sheet-on-me-cfs/


14 July - Norfolk and Norwich

meassociation.org.uk/2022/07/norfolk-hospitals-still-recommending-the-use-of-get-for-children-and-young-people-with-me-cfs/


5 July - South Coast

meassociation.org.uk/2022/07/mea-writes-to-the-south-coast-fatigue-service-about-implementation-of-the-new-nice-guideline/

4 July - North Cumbria ( including BBC TV )

meassociation.org.uk/2022/07/mea-requests-meeting-with-north-cumbria-nhs-trust-to-discuss-their-me-cfs-referral-service/

30 June - East Kent

meassociation.org.uk/2022/06/me-association-writes-to-east-kent-hospitals-university-nhs-foundation-trust-about-their-information-leaflet-on-physiotherapy-for-children-with-me-cfs/

Here are details of a recent meeting with the Royal College of GP’s regarding implementation in July.

meassociation.org.uk/2022/07/report-from-a-meeting-with-the-royal-college-of-gps-on-implementing-the-nice-guideline-on-me-cfs/


Here is link regarding positive changes to GP NOTEBOOK 7 July

meassociation.org.uk/2022/07/gp-notebook-updates-its-information-in-line-with-the-nice-guideline-for-me-cfs/


Here is a link to how Scotland is implementing the new guideline ,
Looking good so far !

meassociation.org.uk/2022/07/scotland-implementing-the-nice-guideline-and-updating-the-good-practice-statement-on-me-cfs/

So far Suffolk and Isle of Man look promising for changes in implementation.

Just ending by saying that The Times (paywalled) published an article recently in May about the new parliamentary cross party group for ME/CFS that has been set up by Sajid Javid . The senior writer of The Times is Sean O’Neill and he describes how it is a bittersweet moment for him.

Sean O’Neills daughter sadly died from ME/CFS last year aged 27 and and her coroner’s inquest is due to be held next month.
I would like to extend my condolences to his family.