The Bristol Cable: #MillionsMissing: the campaign for ME equality

https://thebristolcable.org/2018/05/from-bed-and-the-streets-campaign-for-me-equality/

 

Good article.

 

Why is it always portrayed as if it's just a bunch of ME/CFS patients that believe these therapies to cause harm?

The American CDC removed CBT and GET recommendations. Countless researchers, among them also psychiatrists, have also been critical of CBT and GET and assert that there is no evidence that either treatment is effective.

Does that really count for nothing in Europe?

 

the british media still won't call it the fraud that it so patently is but then all the people who openly speak about its failings/flaws will not call it a fraud either. very strange if drugs companies did this there would be prosecutions and huge legal suits for compensation considering the adverse effects on patients is global that would be a tremendous nail in the careers/ coffin of these self serving pseudo scientists.

 

The evidence around harms from CBT & GET is pretty weak so it's hard to say anything much with any real confidence.

 

The consistently best independent ME coverage in the UK from The Bristol Cable. A local media co-op that puts other media to shame. Long may it continue.

https://thebristolcable.org/2018/05/why-we-became-members-why-you-should-too/

 

Very true

My annoyance was more with the ''CBT and GET may benefit some patients'' for which there is no evidence.

No idea why I phrased it the way I did to be honest. Major brain fart.

 

Lorna Stephenson (the writer of this article) has been one of the most receptive (and responsive) people. Good to have an ally, particularly in that neck of the woods.

 

I get a kick out of The Bristol Cable just being in Bristol. I hope it's in the hospital waiting rooms.

 

"The plight of ME/CFS sufferers was raised in parliament by Carol Monaghan, MP for Glasgow North West – the first time that the disease had been mentioned officially in UK government." In the context of Millions Missing and calls for government funding of biomedical research, let's never forget the short parliamentary debate early 2011 that prompted the announcement by the MRC of ringfenced funding, instigated from her bed by Jan Laverick with the help of her mother Margaret Laverick and thanks to their then MP Ian Swales.

https://www.youtube.com/watch?v=CalHKUZvYAA

 

sadly though, as the poster of the video points out :
"As no funding was given in 2010, there is no actual increase in MRC funding into 'CFS/ME' at all. The 2011 £1.5 million grant is simply x2 of what was meant to have been given, because 2010 was missed out. So we are back to the usual £0.8 million per year and there is no 'news'. 90% of MRC funding is given to psychosomatic theories on 'Chronic Fatigue'."

 

I think it was worse than that, in the sense of looking back further than the previous year to previous decades, well described by the ME Analysis videos. Also worth looking at what studies were actually funded, if they have made any impact on NHS treatment, and how much further funding has there been for biomedical research since then, hence the need for the Millions Missing campaign.

https://www.youtube.com/watch?v=j2biXfyV1bY

 

Now there's an idea ...

 

indeed.........
BTW, the Bristol ME Support Group are on FB
https://www.facebook.com/bmesg