Search results

Ugh, I"m so sorry, @Thinktank. Last year I had a doctor Rx it while she was looking at my list of adverse reactions. I feel fortunate that I understand "ciproflaxin" and refused it at the pharmacy. Imagine people that don't know and just take it bc the doctor phoned in an Rx. It's shameful.

I wonder if taking something like GABA would help calm the brain from over-stimulation during travel? I used to use very low-dose (0.25mg) clonazepam daily, until I decided to come off it for mitochondrial relief. Now I find it is really useful in every-so-often situations, esp bc its half...

omg, i can't even choose which ones to send you erin! http://www.funslurp.com/unique-band-aids

@Mattie, can I come live in your village? It's gorgeous!

Wow, @erin, that's a new one on me! Do you have fun tape like Hello Kitty or Batman? :alien: I get carsick fairly easily too, I'm gonna give that a try.

[n.b. this post inspired by Alvin, not directed at Alvin] The foundation of all his arguments is his core belief system that the illness itself is a choice. Unless he contracts ME, I'm fairly certain that core belief system is not going to change. Same for the whole BPS crew. I don't see much...

I'm still at the passenger-seat phase, with only short journeys, so my input may not apply--as I am seeing and hearing all the things that (newly) switch me to SNS/adrenergic mode. But FWIW, I find taking back roads rather than multi-lane highways or busy main arteries greatly reduces the stress...

Thank you for letting us know, @Clare. This is a very strong step in the direction of best support for patients. I agree it would be useful to clarify further the distinctions between types of CBT on offer, so patients could discern most easily which type they were engaging in, were they to...

I feel the title of the next ME/CFS history book coming on....

So sciency!

Happily, there's a public record.

So I guess by patient burden he means that wearing a fitbit (or whatever was available at the time) was more burdensome than constantly having to lie to yourself and your therapists about feeling better. Sure, that makes sense. :confused:

Besides presenting that clever soundbite of doublespeak (....To regard CFS as a physical disease would be as great an error as to regard it as a psychological illness",) he also speaks as if there is any proof anywhere that "somatoform" diseases exist at all. The whole argument then rests on...

So we totally agree, Alvin; and I in no way advocated ignoring people, just to be very clear. I stated outright that I am glad people are engaging, and their arguments can stand on their own power without giving anyone the V sign. I hope the public correction of the record continues, and as you...

@dave30th Another suggestion I have found helpful is to post an update to the crowdfunding platform, as well as to the other ways you are sharing it, and add the request that if you can't donate now, or have already, please share again widely, which is a great contribution in itself. In my...

Personally, I'd prefer people just tweet great stuff like the patient testimonials above and let it rest on its power, without snarking at MS or anyone else. That turns it into bait for him to provide canned testimonials, as well as being rather like saying "Nyah Nyah" and wagging ears at him. I...

Yes, I understand that completely, but I wouldn't want someone tweeting my posts without asking me (not that anyone would want to,) especially if they were directing it at a specific person. I think it's fair to respect one another in this way despite this being a public spot.

So much love for the increasing media getting it right!

Did they ask JE's permission to tweet that?

Even "just a trial" is an after-the-fact obfuscation. Why then did "just a trial" so heavily influence treatment protocols worldwide? Why did "just a trial" receive so many press releases and articles, all without the qualifier that this was "just a trial"? Why have all the trials related to...