United Kingdom: BACME Guidelines for Severe ME, 2019 and 2024 update

Also Dr. Alastair Miller, commented on previously in S4ME at:

https://www.s4me.info/threads/not-a-recommendation-alastair-miller-on-cfs.1685/

 

I'll stand corrected, but I think Colin Barton's Sussex ME/CFS Society (a local group registered as a charity with the Charity Commission) was co-opted by BACME right back when BACME first launched and the group has actively promoted BACME since its launch.

 

Post copied from the BACME news thread.
2024 updated version.

Just had a look at this Severe ME/CFS Resources Archives - BACME

"Primary care would normally be the first contact for people living with severe ME/CFS. It can be difficult for patients and professionals to clarify how to best meet the needs of the individual. However, appropriate intervention can lead to significant improvement in the person’s condition, function and quality of life, enabling greater independence and reduction of burden of care. Primary care staff can provide options for ways to communicate including home visits, telephone calls, video calls and email along with liaising with formal and informal carers with the permission of the patient.

Where it is possible, patients living with severe and very severe ME/CFS should be offered intervention by a secondary or tertiary care specialist ME/CFS service that has experience of working with people who are severely affected. Where such services are not easily accessible, it may be necessary for local primary and secondary care services to seek advice from specialist ME/CFS services in other areas who may be able to provide guidance to local staff."​

So basically, if I turned up in Bath as a newly diagnosed patient for treatment, I'd be in EXACTLY the same position I was in 12 years ago, with exactly the same treatment.

Only it's actually worse,

• taking into account the issue of 'rehab' and 're-ablement', they can come at me again as a severe patient (which they created in the first place) with the same treatment
• now my voice is even quieter than it was before, because if I complain, what would be thrown back at me, is that this has been agreed by patient Charities who have no accountability whatsoever for harms caused, as they're not even govt arm's length organisations. With the suggestion that "you're the only one" aka The Post Office Inquiry.
• DOLs just waiting for those who don't consent and they 'intensify' the treatment.
• and whatever the outcome due to the bit I've put in bold, if you get worse, it's still your fault!

The DHSC have a played a blinder here and all behind closed doors. Well done! All our rights have been completely dismantled. The only way now to complain is via a legal case, because the PHSO will simply refer to the NICE Guidelines and whatever else they've concocted under the delivery plan via NHS England training.

Lost for words

ETA: For those not near a service, I notice these people mentioned earlier in the thread, now handle post viral long covid, and other 'fatigue' illnesses - they travel About us — Vitality 360