Ron appears to want this device to cost very little, so I am assuming that’s why he won’t put it in a company, raise capital and develop it as a product. Or — it’s bc it’s just not reliable enough to form a company on? I would prefer the device cost money and existed in the world as an approved diagnostic than cost a few dollars and was stuck in some researchers lab, uncommercialized. Surely insurers, Medicare, NHS etc will pay for tests using an FDA and EMA approved device — so why is the cost such a big deal?If the nanoneedle test is reliable as he claims, why has nobody else tried to replicate this result (especially with all the long covid funding)?
Once again, they think the illness can be caused by a chronic infection.
considering all the money that has been raised
There’s a discussion thread about sleep here https://www.s4me.info/threads/sleep-problems-in-me-cfs-discussion-thread.23020/Am also confused that Ron said being up all night and asleep during day typical for ME patients. Not for me. Is it really typical for many? I haven’t heard many say this. More that people when severe cannot fall asleep (insomnia) which did happen for me at my worst.
i have had this sleep reversal since i first got sick .the first decade of practising so called sleep hygiene just made things worse .There’s a discussion thread about sleep here https://www.s4me.info/threads/sleep-problems-in-me-cfs-discussion-thread.23020/
More importantly, who cares what the device costs if all it tells us is this person is sick in some unspecified way. They've yet to show if the nano-needle indicates ME or just some general state of illness. If all it does is the latter, it doesn't matter what it costs, it isn't going to be widely used (unless someone else comes up with another clinical use for it that probably wouldn't be directly related to ME). We can hope that it indicates something more specific, but they need data to show if that's the case or not.
It completely boggles my mind that they have been talking about the electrical engineering of the nano-needle for more than five years and yet they have not managed to run any tests with blood from people who have other diseases over those five years.
I see the tag line of OMF is 'Leading Research. Delivering Hope'. I'm not sure how long that has been there.I understand OMF wants to spread hope to pwME and their families too, that it's really important to them. However, I think hope means different things to different people. What gives one person hope might have the opposite effect for someone else. For me, true hope has to be realistic and based on what is. "Hopeful messages" based on intentions, speculations or wishful thinking don't fill me with much hope at all, they feel too much like empty promises or make-believe.
The quotes TiredSam posted above, that's the kind of stuff that creates very high expectations. OMF's messages used to give me hope back then, but, to be honest, they no longer do. That's one of the dangers of overpromising and under-delivering. You can only say things like that so many times, before people start to wonder why you haven't delivered what you "promised", and you risk losing their trust.
I would say unfulfilled hope is one of the most bitter kind of disappointments there is, and it can be very difficult to handle, especially if it feels as if hope is the only thing keeping you alive.
In my discussions with patients over the years its not common under 3 years of illness, and very common over 10 years of illness. That was my pattern for like 20 years, after an initial 30 years or so without it, just insomnia or hypersomnia. His views are probably formed more from severe patients than mild patients, and this might be an issue that becomes worse the more severe the illness becomes. We lack the proper research to say anything definitive.Am also confused that Ron said being up all night and asleep during day typical for ME patients. Not for me. Is it really typical for many? I haven’t heard many say this. More that people when severe cannot fall asleep (insomnia) which did happen for me at my worst.
I can't help but think they already have tried analyzing patients with other illnesses, some of them tested positive, they didn't like that so now we are being strung along.
The more I see of celebrity anything, in any context, the more I think we should stay away from it.I think a problem with OMF is that it has pushed the 'celebrity researcher' angle too much