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

Andy

Andy

Retired committee member
Sufferers of ME/CFS are taking to Queen Square this weekend. The Cable spoke to an organiser about why the government needs to take action on the disease.


People are taking to the streets to demand recognition and funding to treat Myalgic Encephalopathy (ME), also known as Chronic Fatigue Syndrome (CFS). Sufferers are taking action this Saturday across towns and cities internationally, including in Bristol.

Globally, #MillionsMissing aims not just to highlight the plight of sufferers, but to pressure governments to put funding into the widely misunderstood disease, categorised by the World Health Organisation as neurological, but which many clinicians still miscategorise as at least partly psychiatric.
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https://thebristolcable.org/2018/05/from-bed-and-the-streets-campaign-for-me-equality/
 
While CBT and graded exercise may have some benefits for managing (but not treating) the disease for patients with milder forms, the inclusion of graded exercise is harshly criticised by many patients and ME/CFS advocacy organisations as harmful
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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?
 
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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 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.

 
Awol said:
parliamentary debate early 2011 that prompted the announcement by the MRC of ringfenced funding
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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'."
 
Sly Saint said:
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'."
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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.

 
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