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Over £5k now :thumbup:

Yes indeed fudge and humbug

Hi @Simbindi I phrased it that way as the type of enquiry someone with ME moving in to the area wanting to engage with CFS services might ask. I think questioning commissioning is clearly coming at it from advocacy stand point. I’m saving that for when I escalate it.

Activity Management is a therapy as well then o_O

Oh not yet I haven’t finished with patient services yet. I want them to do the work asking the questions within the organisation then when they have provided a written reply that there’s nothing available i will have something more substantial to escalate. Eta the MEA list of services is out...

Yes a reasonable article by the BBC maybe useful for @dave30th in his pursuit of the CBT for IBS approach

Despite being filtered through google translate this is a well constructed petition concentrating on communicating clear demands rather than falling the trap of going into chapter and verse that unfortunately some ME petition writers fall into.

Heard back from patient services at the CCG apparently sending a link to the ME Association website pointing out there’s a list of services and support groups is a suitable response to a request for what services are available to people with ME/CFS in my city. Which is interesting as there is...

Let me see - how a test might help….. ok - so you’re saying a person with suspected ME is supposed to be the expert in what tests to do and how to treat symptoms………. Yet symptom focusing = catastrophising

Heard back from them today, apparently a response to an email is please phone us. Replied saying I prefer to communicate by email will see what happens

Here’s a leaflet from the community based pain etc service in Nottinghamshire which covers ME/CFS as well. I can’t copy from the pdf but there’s a reference there to providing individualised service so seems like despite also listing GET in what they provide i think they are likely to be using...

Well sometimes you have to push up to the boundaries to get things to happen.

No I’m not suggesting branches of the National organisations. You don’t need to have a formal organisation structure to do advocacy activity. We did MillionsMissing 2019 based on a Facebook group Mentoring people on how to tap in to resources locally surely wouldn’t create any liability. the...

This prompted me into a bit of action. I checked the MEA list and as I thought there is nothing on it with a link to a service where i live. I have written to the CCGs patient service email address asking what service do they provide…… nothing i suspect, it will be under MUS as Chew Graham is...

If it’s nothing like what Parker does why is it called Lightning Process? Twisting words just like those saying what they do isn’t the same as PACE-GET

Need to avoid duplication of effort

Yes the ME organisations need to take a lead, in some places there are effective local charities/groups, eg Sheffield that are probably going to do a good job but they are relatively few and far between. Many locations have maybe a Facebook group, others like where I am no local support group...

I can see why that might work

He’s possibly beginning to understand that his perception of how things were going in the world of CFS/ME was rather blinkered. When you know and work with the ‘establishment experts’ it’s possible a friendly working relationship obscures any failings in their leadership, and research . People...

My unscientific take is this 135week business is dancing on a pinhead by PACE proponents