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Maybe it’s because they are a generic/vague fatigue organisation rather than a specificallyM.E. one? Chronic fatigue is a dust bin diagnosis convering many illnesses that have fatigue as a feature, and it can include psychogenic fatigue which responds positively to CBT/GET. Until ME and CF/CFS...

They’re not interested in dialogue with patients unless it fits their agenda. Any of us who don’t sing from their pro BPS hymn sheet are summarily blocked on social media/ignored. They have had 25 years of patients telling them that what patients want is proper biomedical research to find causes...

I don’t want my GP to be educated on ME by Afme. It’s like asking Nigel Farage to educate MPs about the EU! I have severe progressive ME and it’s the advice dished out by the likes of Afme (who mostly represent vague fatigue/self limiting PVFS and recovered CFS/ME patients) which caused me to...

@Jonathan Edwards. Oh I didn’t know that afme had stopped supporting the ME biobank project. It was their one single positive act in their 30 years of existence & they stopped it? That is indeed very disappointing. Could it be that MEGA wants to build its own bio bank and refuses to include the...

It’s still the case. They have never even criticised SMILE and LP. Do they still advertise LP in their mag?!

It’s not old news, they continue to refuse to even criticise SMILE let alone anything more. MEA and Charles Shepherd did so clearly on radio 4 today, calling SMILE pseudo science. Yet afme were totally silent.

@TiredSam, Unfortunately ‘Within the S4ME rules’ caveat can also be used to turn the heat down/off on Afme. Personally I think it makes no difference how many times/years we ask Afme about their actions as enablers of the policies of the BPS lobby amongst patients, we’ll not get a straight...

I think you’re being admirably optimistic if you think that Afme will actually reply beyond the usual fudging of this issue. There is no will on their side to engage with patients’ fundamental concerns or to address them.

Patients are regularly blocked from your social media for totally innocuous remarks. The common factor seems to be anyone questioning your decades long collaborations with the BPS school of ME.

Totally agree. More fudging and none answers. This has been Afme’s MO for decades.

I think it’s very important to make sure this forum doesn’t just become another platform for an organisation as powerful as Afme to spread more misinformation and present ‘alternative facts’ on their behavioural therapy supporting policies and give patients yet more fudged answers as they’ve...

Yeah I thought so, which makes the continuing MEA CULPA meaningless

Precisely. MUS label illness: don’t do any more costly investigations and fob them off with CBT/GET

Wish I could share your optimism. Also not quite sure the situations are analogous? Russia had 30m people as cannon fodder to beat hitler. A group of very sick patients many of whom can’t even leave their beds let alone their homes to even be seen by a specialist isn’t quite as effective as 30m...

@lisette, the issue of the ‘possible’ continued support of prof Crawley by Afme was raised on FB last year. That’s when the CEO made a post calling our concerns on this issue ‘vexatious’ and ‘time wasting’. I don’t think there is any future funds going to Crawl how long has their current CEO...

Oh, there was me thinking that afme joined this thread under their own volition rather than being prompted. Tx for your effort for directly contacting them anyway Nancy.

Precisely. It is very convenient for an organisation to hide behind the ‘rule’ book & use it as a means to silence legitimate concerns by those it is (mis)representing. On the subject of MUS & ME being indexed under FND & IAPT, it is extremely worrying. For a start why is ME indexed under...

Yes that’s one of the possibilities Lucy. It was around the time that Crawley was doing her media blitz (with the backing of SMC) on SMILE & claiming that the lightening process cures ME in kids. Incidentally Afme have not come out and criticised SMILE, Charles Shepherd and MEA did so...

Hi Clare. Someone here mentioned it might have been on the AYME page. I try and see if I can look for it at some point, as i have seriously overdone it (arms are going into paralysis) on this thread and had mentioned last night (above) that I was taking a break from commenting. Also it might...

I think those of us who are banned from their page don’t have access to this search option?