I really appreciate the efforts being taken here, and I'm aware of how much time and effort any project like this requires. I think the focus of the campaign could be tightened somewhat, and perhaps the strategy could be refined to define 1) who exactly the campaign is aimed at, 2) the message we want the recipient to receive, 3) what changes we want them to implement, and 4) how we expect them to implement the required changes, 5) what tools or info we can provide to assist the changes, 6) who else might be able to assist with the project (e.g. the media, charities, etc). I'll lay out some of my thoughts below, in case helpful to anyone.
MEActNetUK said:
In the event that PACE is released prior to the September protests, 45.45% of you would like an independent review of the trial data.
...43.43% of you would like to see The Lancet retract PACE...
If an 'independent' review of PACE were carried out by researchers appointed by QMUL or the MRC, then we could end up in a worse situation that we are now, as it's more than likely that a superficial review would confirm that, for example, the PACE recovery analysis was carried out correctly as per the published results paper. The Cochrane analyses (i.e. independent reviews) have already concurred with the published PACE outcomes. So I personally think calling for an independent review could be misguided and potentially counter-productive.
However, any academic could carry out an independent analysis of the data (e.g. as per the published protocol) if QMUL were to release the data. So, personally, i would focus only on obtaining the data rather than calling for a review that could end up being a stitch-up.
MEActNetUK said:
38.78% of you would like GPs and medical practitioners to inform patients of dangers of GET
I wonder what evidence base would be used to inform GPs of the dangers of GET? As far as I'm aware, nearly all of the peer reviewed evidence from practical research studies demonstrates that GET is harmless. We would need to write a solid piece of literature if we're going to convince the authorities that GET can be dangerous. There is evidence to support the theoretical idea that GET is inappropriate.
MEActNetUK said:
44.90% of you would like our second demand to state that we need a comprehensive review of the NICE Guidelines, including removal of GET as a curative treatment.
I don't think GET is promoted by NICE specifically as a curative treatment. I'm not sure if the NICE guidelines are specific about outcome expectations for GET? I don't recall them mentioning recovery or cure in the context of CBT or GET.
Personally, I believe that a comprehensive review of NICE would be fairly fruitless at the current time. In my opinion, the most we could hope for is that ME patients are provided with a more flexible palliative care approach, better suited to each individual. But the NICE guidelines already promote such an individualised approach (e.g. "An individualised management plan should be developed with the person with CFS/ME"); it's just that the guidelines aren't always adhered to.
MEActNetUK said:
88.54% of you believe that doctors should have the right to treat ME as physiological without risk of medical licence restrictions...
There are no proven treatments available for ME so, in my opinion, this simply isn't going to happen. The GMC simply isn't going to permit doctors to prescribe unlicensed treatments for ME, because it would have to make a single exception for us, and it wouldn't get approved by all the bureaucratic layers and hoops it would need to overcome Doctors can already prescribe off-license treatments if they can justify those treatments. I think the most we might expect, after a long and coordinated campaign, is to be able to persuade the government or one of the relevant authorities to take a slightly more flexible approach with ME. But the GMC is a bureaucratic monster with many heads, and isn't going to change anytime soon.
If a campaign is carried out along these lines, I'd like us to list: exactly what treatments might help people with ME; the research evidence that supports those treatments; and to explain why ME is a special case whereby patients deserve access to potentially dangerous treatments despite there being no adequate level of evidence to support the use of the treatments.
I wonder if such a campaign would be better directed towards the government, the GMC, NICE or some other authority?
MEActNetUK said:
In the education of GPs and medical practitioners...
Does anyone know who is responsible for GP training policy in the UK? (Training universities, NHS trusts, the GMC, the Royal College of GPs, or another body?)
So, the above list demands:
1. QMUL to release PACE data;
2. QMUL, the Lancet or the MRC (i assume) to carry out or fund an independent review of PACE;
3. A review of the NICE guidelines (the review would have to be requested by the NHS);
4. Better education of GPs (via universities, NHS trusts, the GMC, or the Royal College of GPs?); and
5. The GMC to change its rules and make a special exception for ME.
The recipients of these demands potentially include (but are not necessary limited to) the following bodies:
QMUL, the NHS, NICE, the GMC, medical training universities, the Royal College of GPs, the Lancet, the MRC, and the UK and regional governments.
So I wonder who the protest would be directed at? And what message would each public body be presented with?
Personally, I would think it better to focus a single message towards a single body, with a single aim in mind.
If we create many demands, all aimed at different public bodies, then most of our demands will be meaningless to most of the people who read them; the impact of the messages would be diluted; it will be confusing and there well be no central message to focus attention on. Also, I would prefer to focus on issues for which political pressure is most likely to effect change. Furthermore, if the media were to be involved then they would require one simple message, directed at a single recipient.
Anyway, just my thoughts. I hope some of them might be useful. I must admit that I'm not very well informed about strategies for this type of campaign, so I'm going by guess work about what might be best!
