If ME/CFS research got £1 billion, what would stop it being wasted?

[tuha]

Some years ago I did a crowdfunding campaign for OMF for their ME/CFS severly ill big data study. I think Sasha helped me with the text that time.
We kept it really simply. We presented the project, we explained the basic stuffs like the amount of momey needed, what OMF will spend money for, research team and so on. We created a facebook campaign page (you can find if here if you want to see https://www.facebook.com/profile.php?id=100066699890054), we tried to make it viral on social media and ME/CFS web pages and forums and we brought 1 or 2 short news every week. I didnt spend too much daily time with it. I think if the project is good with good treffic on our ME/CFS channels it can be successfull.

 

[Utsikt]

Can you elaborate? I've never heard of a information sheet in the context of clinical trials before, how would the information sheet in my trial be any different or less honest from the information sheet in similar research?

Participation in research requires informed consent. Informed consent requires a full understanding of both the risks and benefits of the thing you’re going to study.

The aim of CBT for ME/CFS is to convince the patient that doing things isn’t harmfull. The patient has to fully believe this for CBT to work (according to the BPS people. Therefore, it’s seemingly impossible to give the patient accurare information about the known risks of CBT beforehand (e.g. deterioration), and the aim of the intervention would be to convince them that the information sheet is wrong (i.e that CBT is harmless).

 

[Jonathan Edwards]

Can you elaborate? I've never heard of a information sheet in the context of clinical trials before, how would the information sheet in my trial be any different or less honest from the information sheet in similar research?

I am suggesting that your information sheet should be honest, and in a way that pretty much no information sheet for CBT trials has been so far. Being honest means telling patients what the evidence is for thinking that the treatment might help them. There isn't any so presumably previous information sheets have pretended there is?

You would probably, in order to provide the legal required of informed consent, which means informing patients of the real situation and motivation, have to say in the sheet that they were being offered a treatment in a trial that was being done because despite there being no reason to think the treatment would help some bad trials had been done before which pretended to show it worked and this trial was aiming to show they were just bad trials.

Would you get many volunteers for you trial?

 

[Sly Saint]

Isn't that what happened in the US with the Long Covid money?

from memory it also happened way back in the late 80's or 90's in the US, when a large sum of money earmarked for CFS research was used on everything but.
But it's never going to happen again; money is more likely to be channelled into trying to get pwME or LC back to work by whatever means possible.

AfME did a lot of work with the DWP on this.

ME can have a significant impact upon a person’s ability to work. For some, their symptoms are such they can’t consider working at all.

there's that use of 'some' again........pwME unable to work is actually around 75%. (50% moderate, and 25% severe).

ME and work | Action for ME

 

[Sean]

Any condition that has diagnostic criteria requiring a 50% or greater reduction in activity capacity is already imposing a serious loss of function. More than enough to make a patient uncompetitive in the labour market. Let alone factoring in having to try preventing further deterioration.

Statistically the average patient will have considerably more than a 50% reduction in capacity.