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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

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: