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That was exactly my issue. IV saline cannot be seen as placebo for ME/CFs when is one of the tools recommended for OI. They should of use sugar pills ( say one treatment is IV and the other pill form or saline shots.

I do so well in it, that it is my permanent state now (going on 2 years). I feel very much better in it. I can tell a huge difference on what I can do vs when not on Ketosis, I break it every time I get the rash too bad (i do get keto rashes) or the week before my period, I also do Intermitten...

Yes you will get PEM if you exceed your AT by certain time. When I got tested ( not By them but same concept) I was told to avoid going over the AT and I had to focus on building the Aerobic capacity ( slowly). By avoiding going over AT you avoid relapses and damage. So When you get tested they...

This is simplistic, those of us who struggle w tummy, the oral solution is contra productive BecuAse gives you diarreah and then you loose more than you take in,”. For me I do better on IV, feel like normal person. Oral depending on tummy day can make me worse than better. Not the same!!!!

What are the tools at our disposal? Obviously talking will not cut it. 1) Can the New Lady (Karla) be taken to the (lets say medical board) but the professional license she has to remove her license? or at least review it? 2) The paper to court or any other legal venue to pressure them??? This...

Which news ???

THank you all. @Barry @NelliePledge @chrisb @Trish @Barry Superb work on the rephrasing!!!

What does this means? Sorry not sure if it is my English.

What is the reasoning for sharing these links again, it just raises Search Engine (Google) ranking of the original paper, doing us a deservice. you might want to break the link in a way that if somebody wants to see it, they can copy and paste but a literal link is just not good. I saw a few...

I wish one could post comments!

What drives me crazy, even if you don’t call it fraud, is people still think they are “stupid”, or that it was a mistake. Even though they have press releases in a coordinated way, every time they see themself attacked. I mean this is so obvious, that when PLp call it what is not, it drives me...

OH dont worry about that we will raise the money, even if we have to do laying down car washes :woot::woot::woot::woot::woot:

saves insurance Billions? In US there is a 2 year cap disability for mental vs non mental. So by supporting CBT they save having to pay for years to disable people.

Is one of the things on the criteria but you have to have other things, not just that. I have connective issues and I do have horrible stretch marks since I was 9y old, not due to weight, I loose wight I get a new set, if I gain i get a new set, I sneeze and get some...

Not necessarily. I take 4 different drugs the beta blocker alone is not enough, but I do know other patients that it is enough. By the way, without OÍ meds I am house/bed bound. On drugs I work full time job ( I do not get as much PEM while on vasoconstriction drugs. The only reason I ahve to...

Another thing is, as a community we have more power than we think. We are millions of plp, the day we decide to trend on tweeter, Facebook.... we can make noise and create havoc w out message. So if nothing else make sure to create accounts and have them ready for action. You can tweeter...

I forgot if it was a protein or what in the profile but I remember reading what was very low on depresión was high in ME or viceversa. Protein or a neurotransmitter. But I remember thinking well there goes the theory you can have both.

@Hip I am struggling w EDS like things, I am getting bones pop out like at least once a month, not fluro antibiotics for me but I do struggle w coaxsxie b2. I also feel pressure on the head and pain behind the eye. I do Not get headaches ( except pressure) and I do not think I have cci. I...

I have both and they are different to me ( I had a bout of POTs when I was 15 to 20y without ME) so I can tell them apart. The main difference is dysautonomia will have the inability to be upright. ME/CFs exertion makes you feel sick. With POT you can have excercise intolerance but hits right...

I saw on the last symposium that some like to know and organize the data by how long you have been sick. So what type sub typing and grouping are they doing?