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This +1000 Tragically a lot of media today won't acknowledge the painfully obvious and hide behind bothsiderism because they fear the "other side's" wrath

So Intel is not your brand then?

I agree but pictures convey powerful messages. For years i was hiding my symptoms, the exhaustion spells, the motor control problems, the shakes, the fatigue and so on. Now i let them show so people can see for themselves what i live with plus the severity makes them harder to hide. Seeing me...

Probably their biggest fear is either a court case where they lose their medical licenses or that a mainstream news organization will catch wind of this and start breathing down their necks and reporting what they find. If the BBC or Guardian started investigating or posting David Tuller's...

That sucks :( In Canada we have legal aid available, i had to use it extensively and if i had not i would have been royally screwed. If i had looked into it earlier it may have saved me years and gotten me more money :(

They do say a picture is worth a thousand words

Get legal assistance from the beginning It may cost money if there is no legal aid available (look into if there is) but it can make the difference between approval and denial. Its worth the money but discuss cost before signing if you can't get subsidized. Make sure you really like the person...

Indeed. I am very much reminded of MS, it was hysterical paralysis, and i'm sure even after it was proven biological it took a long time for public sentiment to catch up to scientific knowledge. Today most people have heard of MS, may know its autoimmune and usually know that its crippling and...

Thanks for the additional information and welcome to the forum. Its interesting to hear you have spoken with two of the big players and they are both supportive. And its not incredibly surprising that they can't take on even more work at this time even if it is disappointing :( The biggest...

They did say it affects 1% or 1 in 300, an error that needs correcting. I don't know how to contact them to point that out, there is no contact the author link. I agree that they miss some of the details but its very hard for one article to convey everything. I do hope there is more in the...

To most reading the story this is a "new" problem since they have never heard of it or if they have they didn't realize it was a biomedical and not psychosomatic as they heard somewhere. And it does not affect them, their neighbourhood is not on fire and they are not being told to evacuate. If...

I say its worth asking for. Who knows what the data will tell us and if they are trying to hide it it would be for good reason.

There is an error in the (otherwise extremely excellent) article, Does anyone have the ability to let them know to correct it?

I had started a thread a while back on what to give to my new GP assuming they knew nothing about ME and these were the recommendations http://www.investinme.org/Documents/Guidelines/Myalgic Encephalomyelitis International Consensus Primer -2012-11-26.pdf http://www.me-ireland.com/Review.pdf...

+1 I could write a sleep guide for ME and it would basically say listen to your body, here are the general trends to look out for it you fall into one of them, here is what might help, here is what you can try, don't expect success but these are the known typical patterns. I developed my own...

Based on the first post the fundraiser's have a specific theory and expect that once they prove it we will have a disease mechanism. At this point thats simplistic, dozens if not hundreds of theories have come and gone and none have a solid compass saying look here and find the pot of gold. So...

Perhaps this is what we need to do, flood the airwaves with articles, stories, op eds and as much media as we can come up with.

I had to make up my own sleep hygiene rules based on experience and a lot of trial and plenty of error

If you can scrounge together the money and get someone to run it then get statistically significant numbers of patients enrolled (each aspect will need dozens or more) and wait years for results then i'm all for it.

I am unable to read the thread but from the first post here are my thoughts Nothing has been written except the PACE pusher BS because no one has taken it upon themselves to do so. We have very little evidence since no real research on this has been done or collated. So all we have is...