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I've had similar thoughts, only time will tell.

Well then this trial is a report on how well you can convince someone to say what you want them to say and has nothing to do with ME/CFS at all. Then its used to lock patients up and give them treatment that makes their condition worse or blamed for failure to recover or as the basis to deny...

I will not unfortunately, and i don't have the knowledge of the NIH money constraints or procedures, though i hope someone reading this does and can ask excellent questions Are you able to attend and ask the questions i have posted?

I understand, tell him off if you wish, will that get us money? Are the dollar amounts to each disease decided by congress and unchangeable, can he get back the money that was allocated but not spent for two(?) decades for ME/CFS, does he have a discretionary account to draw on, can he lobby...

My point is be ready for this answer and have a thought out answer ready. What options does he have that we can press for use to our benefit? If you want to win a battle it helps to understand how your adversary works and what his options are. When you anticipate what unhelpful answers your...

Your not going to get any argument from me since i completely agree with you but you don't go crazy on someone who holds the purse strings and expect him to help you. The reason i mentioned it was so we could have an answer for this likely response, and you get more flies with honey then...

His answer will probably be that they don't have the resources and his hands are tied and he is doing everything he can in the current climate (and then will explain what we already know or throw in a tidbit) So whats a good reply to such an answer?

Yeah, here https://www.s4me.info/threads/michael-sharpe-skewered-by-johnthejack-on-twitter.3464/page-6#post-63860 But if it wasn't my post that inspired it thats fine, just glad to see it used :)

My Kinsley Gaffe reference made it into an article, *happy dance* :emoji_blush::emoji_dancer: :emoji_champagne_glass: :emoji_cake: :emoji_shaved_ice: Okay, i had my moment, PEM has brought me back to earth :emoji_zzz: Edit: Why does being happy for a few mins cause such a crash so quickly, i'm...

@Alvin is honoured to have inspired posts. He should perhaps use this disclaimer in similar situations :) I agree :( True I understand what your getting at but if we don't challenge him then many will believe his tripe, we have not defeated the PACErs yet, we may be on the way but we are...

Thats probably the best way to handle tweeting MS from another thread

I agree, we have a very uphill battle

It could be. In the end since science does not work on testimonials no matter their source, they can claim all they want it amounts to bupkis.

I believe you are correct, i didn't realize he was trialing two treatments. DCA has also been discussed and i don't think it will work well or for long but its probably available to buy somewhere if you want to risk it

Your $200 is safe, its already disproven https://www.s4me.info/threads/a-novel-nutriceutical-treatment-of-me-cfs-frank-comhaire-sept-2017.1036/page-6#post-64881

Thats basically the crux of the argument, he is desperately searching for an excuse that can't be skewered.

I doubt it, its probably a statement they assume you can't disprove.

Its hard to say, on one hand he will probably find out the tide is turning sooner or later, on another this will force his hand which could turn out good for us or work against us, hard to be sure which.

I suppose we can't expect everyone to understand the issues like we do, though that galls me that ridiculous nonsense is convincing to people. I suppose that explains politics :emoji_face_palm: Thats an interesting question, though the crux of his beliefs seems to be there is no medical test...

It was tested and it failed to reach significance https://www.s4me.info/threads/kpax002-as-a-treatment-for-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-a-prospective-randomized-trial-2018-montoya-et-al.3410/ Also you can buy most of the ingredients yourself, just get your doctor to...