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Thanks for all that info @MEMarge. I usually stay away from FB but will have a look at this. What boggles the mind me is how BACME is supposed to be training/guiding ME care providers in "best practice" but cannot even be bothered to follow either NICE or their own guidance. Is there no...

Thanks. That isn't actually a template for a plan though, it's basically an assessment of how diagnosis and care has (or hasn't) been provided in line with the NICE guidelines. Useful to show how woefully poor care has been, but not to actually help create an effective, personalised, patient-led...

Do you have a link to that template online? We only managed to find the BACME assessment document.

This is what we are doing now - waiting for their "plan" and expecting to have to push hard for evidence (precisely because all they have provided so far is waffle). The person with ME (not me, a family member) has their own very clear and strong plan however, which is why we are demanding a...

I think they are counting on people being desperate, and too tired to fight them. I think they are going to find out the hard way that they messed with the wrong patients. I'm not letting this go away, and not letting them hide behind BS excuses. Of course, it may be us that find out the hard...

Of course, we are living in times of endless budget cuts and there really aren't funds for anything above basic services (and often not even that). What they were saying was that even following the NICE guidelines to prepare a patient-led care and support PLAN was impossible, and this seems like...

I learned today (from a clinician working in TRACCS) that they apparently haven't implemented the NICE guidelines "due to a lack of resources". This was in the context of NICE-recommended care and support plans, which they said were not being prepared for pwME seen by TRACCS. This seems very...

I can say from personal experience that Dr Jo Begent was an absolute disaster in our case. We are in the process of filing a formal complaint about her, but suffice to say that she appeared to simply not care. In and out of appointments on her phone, brushing off questions about possible...

Is anyone in this discussion attending today's meeting? If so, it would be wonderful if you could download or screen-capture the presentations so the rest of us can see what BACME is sharing. As a carer for a young person with ME, I am desperately fighting to avoid the deconditioning and other...

Thanks for sharing this. If anyone has other pre-recorded sessions please share them. We need to know what is being said in these meetings, to prepare our strategies and stay sane.

Did anyone attend this webinar? Does anyone know how we might be able to get a recording of it? Thanks in advance!