PATIENT LED RESEARCH

[Joolsg]

As there is no research under way or planned in the UK, maybe we should set up our own patient led research group. Sufferers of Long Covid are leading the way in this area.

Perhaps we could put out a call to all UK members of this forum with relevant knowledge or experience to move forward?

It’s clear that no neurologists or pharmaceutical companies are doing any research on new treatments or existing problems like over prescription of Dopamine Agonists, augmentation and withdrawal or why iron infusions don’t help all sufferers.

I have no idea how to go about it but I’ll contact the Long Covid group and ask for ideas about funding etc.

[Hidden]

This sounds a good idea.

I have some knowledge/experience of research.

I'm not sure how much energy I could commit though.

Still thank you for contacting the Long Covid Group. I also woinder if it's worth approaching RLS-UK.

[Joolsg in reply to Hidden]

I can try. However I know funding is a problem. Even though this website has about 15,000 members, only about 250 are members of RLS UK & pay the membership fee - so money is tight.

Hopefully the Long Covid group will reply

[Hidden in reply to Joolsg]

Yes, funding could well be a problem.

[dickJones]

An excellent idea. I suffer from PLMD, but the broad characteristics and treatments coincide. Like so many of the members of this group, I have had to self-educate about my condition and then self manage my treatment in the face of medical ignorance. Running the show ourselves is all we have left.

[Munroist]

I think this is an excellent idea, thank you for proposing it. I'm not sure how best to proceed but there are certain things which I find odd which might be relevant. The first is that according to various estimates I've seen, a sizeable proportion of the population suffer from RLS, I think I've seen estimates between 5% and 20% so if a treatment or therapy were to be found it ought to have a pretty good market. Just look at how many sufferers here are taking multiple (and often partially effective) medications in an effort to manage the effects.

Secondly there is growing understanding of the importance of sleep to physiological and mental well being with a number of studies implying poor sleep leads to greater incidence of dementia and many other diseases on top of the debilitating effects on day to day function and mental health so from a public health perspective it would seem to be a key area to address to reduce the strain on already stretched NHS and Care services.

I agree contacting RLS.org seems a good place to start and I wonder why that organisation isn't driving something here.

[Joolsg in reply to Munroist]

I think it’s lack of funds. If more people became members that might change . The US RLS foundation only allows paid up members to access their site & help forum and they receive $35 pa from thousands of members. If the 15,000 members of this help forum joined RLS UK at , say £20 pa) that would provide enough funding to set up a research study into new drugs or IV infusions.

I know the US opioid study is funded in this way.

Like you, I’m surprised Big Pharma isn’t doing more research and studies because of the number of sufferers but I strongly suspect that’s because they are making so much from the DAs and the doctors and neurologists are not telling them the scale of terrible side effects ( impulse control disorder & augmentation).

Everyone who has experienced either should notify the UK Yellow Card Scheme or the FDA about side effects.

But we do need politicians and journalists on board to spread news/ lobby on our behalf.

[Walras]

The Executive Director of the RLS Foundation in the US is a very kind and caring woman and I bet she would be very helpful to you. I have not looked at the financials of the Foundation, but do know they receive significant contributions in addition to the annual membership dues. I do think it would be a good idea for those who actually suffer from this disease to at least put together collections of personal experiences that could be shared with the "experts" who could then take that information and perhaps learn some important things in that way. I am not a scientist, but know there is quite a lot that goes into doing a scientific study in order for it to be considered legitimate. I am a part of the Opioid study in the US and there are several questions I think they should have added to their study that would have provided better information. I have made suggestions, but once the study was started, they could not add anything. They should have had an actual sufferer review the questions first. I just wish that physicians would take the time to join forums such as this to find out more about what those who have RLS are dealing with on a daily basis. Not to sound like a narcissist, but it gets old being the smartest one in the room when you go to the doctor to discuss RLS and how to treat it. I had one doctor refer a patient to me to help them understand the options and best way to approach it. I of course referred them to this site! Along with the RLS Foundation and other resources. I have learned a great deal from this forum. Thank you all for that.

[Joolsg in reply to Walras]

Thanks Walras. That’s helpful. I will contact The US foundation. I am a member and am also part of Dr Winkleman’s Opioid study.

I am also in contact with Dr Winkleman’s assistant Ben who replies very quickly.

[Hidden]

That's a fantastic idea Jules. I'm based in Australia but if there's any way that non UK residents could contribute I'd be on board. Alternatively we could come up with and agree on a research topic, put it out to the research community, and then crowdfund it. Worth considering for sure.

[Joolsg in reply to Hidden]

Absolutely Amrob. Thanks. The MS Society UK have given me contacts at the Neuro Alliance group but have said funding is very difficult at the moment- because of Covid.

Hopefully I’ll also get a response from the Neuro Alliance & I’m going to contact journalist friends.

But yes- Crowd funding may be the way to proceed.

[involuntarydancer]

Crowd funding is a great idea.