Poll: What Gives You the Most Hope for a Cure?

[Alvin2]

I've slowly come to the view that some people on these boards might be inclined to place an excess of faith in one person. I know why they might. When you see a scientist from a prestigious institution, with a great track record, whose motivation is second to none, who seems like an absolutely terrific person and looks like an iStock photo of a brilliant and revered scientist, i's comforting to believe in him.

You are technically correct, however OMF has a lot going for them, motivation, experience and an amazing track record, not just in other areas but already in ME/CFS. They have already figured out more then anyone else in an extremely short time frame. They are an all star team, not a bunch of PACE pushers.
Of course your correct, no one should put all their eggs in one basket, path dependence can ruin you if you choose the wrong path, but what better options do we have, if billions of dollars were flowing into ME/CFS research then we would not be here today.
I expect OMF to do well because they are building on a solid base of some of the world's top researchers/technology developers, access to technology most doctors will never have and pure determination. They are not in this to publish papers and make names for themselves, they are in this to find the etiology and cure (and they have access to every FDA approved drug, are there any other ME/CFS researchers with that kind of access?
In a contest between Homer Simpson and Michael Jordan who would you expect to win a basketball game?

 

[Gingergrrl]

Most of the money is in cancer. I sort of suspect the big discovery that cures us is most likely to come from an oncology researcher nobody's heard of. And I think this is reason to hope, not reason to despair.

I actually agree with this and I think Fluge & Mella's discovery of RTX in cancer patients was a gem that only OMF and Kolibri (Norway) have picked up on at this point (besides Fluge & Mella themselves of course!). None of them are afraid to take risks and I think this is hugely in their favor.

I expect OMF to do well because they are building on a solid base of some of the world's top researchers/technology developers, access to technology most doctors will never have and pure determination.

They are also not afraid to change course if they discover something is not what they originally thought was the potential answer. To me this is a huge strength. I know little about the research but having worked with them as a patient since 2014, I am the most hopeful I have ever been that I could potentially go into a remission and I was as sick as humanly possible and had moments of near death mid 2015. It is not about ego for them, it is about helping the individual patient, and finding answers to ME/CFS and obscure autoimmune & neuroimmune issues that the rest of the planet does not seem to know exists (or does not care).

 

[Jo Best]

Most of the current ME/CFS researchers around the world are working without ego and for the benefit of patients and importantly, as mentioned, valuing their own negative findings as taking them steps further along the road to discovery.

 

[trishrhymes]

Most of the current ME/CFS researchers around the world are working without ego and for the benefit of patients and importantly, as mentioned, valuing their own negative findings as taking them steps further along the road to discovery.

I've noticed that too. There is some really good science going on. I guess that's partly because several of them got into ME research through having ME themselves or a family member with it. And not being a 'hot topic' that gets great kudos, they are likely to be in it for the benefit of patients and the excitement of doing real science in a field where so much is still to be discovered.

Whatever the reason, I am so grateful to the few who are researching ME with so much dedication. I just wish there was the funding for more...

 

[Lissyleigh]

There definitely seems to be more awareness now. A lot of people know someone with it and/or have more understanding about the fact it has been greatly misunderstood over the years. I just hope the funding keeps coming and it provides enough to get some solid answers about what's wrong with us.

 

[Jo Best]

I've noticed that too. There is some really good science going on. I guess that's partly because several of them got into ME research through having ME themselves or a family member with it. And not being a 'hot topic' that gets great kudos, they are likely to be in it for the benefit of patients and the excitement of doing real science in a field where so much is still to be discovered.

Whatever the reason, I am so grateful to the few who are researching ME with so much dedication. I just wish there was the funding for more...

That is true, e.g. I had been v. impressed by the commitment of Dr. Maureen Hanson, but only recently realised that her interest was sparked by being the mother of a sufferer. One of the medical students involved in the Invest in ME Research (Navena Navaneetharaja, now a qualified medical doctor) had spent three months in Dr. Hanson's lab at Cornell as part of the international collaboration. I don't know what motivates Profs Simon Carding and Tom Wileman (Norwich Research Park) or Dr. Jo Cambridge (UCL) or Prof. Angela Vincent (Oxford) but I am sincerely grateful for their enthusiastic perseverance and dedication to helping Invest in ME Research in their quest.

https://twitter.com/i/web/status/838813561149325316

 

[Wishful]

I would have voted for E.T., since the others don't really qualify as 'hope' for me. However, if ET's came down and offered medical miracles, they'd most likely be held up for decades by corporations and bureaucrats...