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Also taking out the financial aspect. In terms of self worth there are voluntary activities of value to society such as working with patient organisations that provide that without the strict performance/attendance demands of a job.

Yes @Peter Trewhitt I remember the uncertainty around knowing what was going to happen. I was trying so hard to keep working but it was really hard and once my supportive manager left the organisation it became much more difficult. The performance management system was very strict. Everyone...

@Samuel i think this is the video you mentioned

Oh I agree it’s much bigger but it has to start somewhere and steps that can be taken must be. For example ME association have a budget for sending copies of the Purple book to gp surgeries on request from people with ME and give them out at conferences. I would be expecting this effort to be...

Wow that’s a brilliant advocacy action by Rachel Ephgrave i hope Phil Hammond has the guts to take up her offer…….

these people are so convinced they are such geniuses on ‘CFS/ME’they think they can say whatever they like about their ‘model’ and it will be believed despite evidence of what they always used to say being available

LP ‘support’ i suspect boils down to us & them mindset. One of them in particular ie Crawley is l8nked to it, criticism of her due to LP connection isn’t reacted to by them ‘reading the paper’ and understanding the criticism. it is unthinking, knee jerk one of us is challenged, we are all...

Dancing and jabbing like Mohammed Ali. 3 knockouts :trophy@

I feel like every single one of these people sending in comments from their organisation needs basic awareness of ME. A copy of the Purple book and link to Nina Muirheads CPD module to each would be a starting point. Don’t think it’s feasible as presumably NICE wouldn’t release the contact...

It’s passive aggressive behaviour - the whole thing was set up for them to discuss like adults but….

Nauseating.

I was back starting very gradual phased return within 6 weeks of finally getting a diagnosis. I tried for months and months to increase hours worked. That was based on the AFME ‘pacing up’ booklet written by a member of BACME. Went to the CFS clinic in 2016 and did their ‘programme’ which...

Boom boom

BMJ i seem to remember Ingrid Torjesen had hashed up a previous BMJ article about ME

Go for it Brian we’ll get the popcorn ready :thumbup:

Could be automatically generated by the content management system based on recent relevant information- presumably using ME/CFS will have pulled through Nina’s blogs.

I note RCP statement has at the bottom links to other relevant content which is two blogs by Nina Muirhead. It is ironic their statement could result in medics going to those blogs where they will get decent info about ME

:banghead: Clueless Eta that is definitely worth an @dave30th blog all of its own

I agree @Arvo it used to be a quote from ME Patient organisation was thrown in at the end of articles now it’s White whinging.

Agreed. The hardened GET proponents are not going to change much if anything due to these guidelines. However they are a minority and there will be a large group of people who will work within whatever approach their employers set for them. Ensuring implementation by getting the manuals and...