Im glad Mark came to do this but 25% to one third are housebound beddridden.
This envelope is sometimes so difficult to find when your ANS goes all over the place and BPM is never cosistent.
We know PEM exists we know that that we have to PACE but why?
The second we got this illness it was apparent.
I get this and is an important part of the picture, very important.....but this leaves out a significant proportion of patients, and does not address paients that PACING doesnt seem to have an effect on, does not take into account wax and waning of symptoms regardless of activity....Basically the ones that are really sick....
This major Gap in research on the people most ill is a problem.....further CPET can and has lead to permanent crashes in some for years of complete disability....
There was a Pole taken somewhere else where overtime.....over 70% Severe Worsening of Symptoms overtime...this was the patient community saying this...
So...I appreciate the work it is important but telling us to keep pacing plus some tips and tricks does nothing for me.....
He touched in Mito issues, blood volume issues and damage to the anerobic system....that is what needs to be figured out...
The women that spoke about her daughter and never knowing and being fearful and the difficulties of Pacing can be like a full time job....
she is right Pacing is needed but tends to dull down the severity of the highly debilitating, life altering aspect of this crippling illness.
Telling us to PACE gives us a band-aid solution.
Gives countries an excuse that their is a viable treatment and suggestion for improvement....for some maybe..... those stats are 10% full time work, less than 20% part time work and the other 70 that includes 25% completely bedridden and house bound.....those are are terrible stats
I know its being worked on but talks like this, although I know are good and are beneficial to some....in my eyes make an important point that.......
The Health Authorities, Governments, Drs, Insurance Companies and others have used to not FUND the illness.....
I want to know whay my Mitochondria arent working? I want to know why I have Dyautonomia? I want to know why oxygen is not being delivered to my organs? I want to know why my Anerobic system is damaged?
Thats what we want to see studied they have been telling us to PACE for years....