Dear
@Tilly,
I very much appreciate your situation but I think it is important not to overestimate what is known about either the illness or its treatment. Ron Davis certainly does not yet know anything of use to a doctor. And I doubt making a diagnosis of POTS tells us much because the POTS pattern in ME might need to be treated quite differently from POTS is other situations and even there we do not really know what to do. My own suspicion is that orthostatic intolerance in ME may have nothing to do with pulse or blood pressure. We really don;t know about these things.
Much as I understand you wanting to monitor I would personally forget about taking any blood pressure or else measurements or temperature. I don't think they tell us anything useful in ME. My understanding is that for PWME any intervention takes up effort and it seems to me a pity to use up effort doing things that probably achieve nothing.
I agree with most of this, it is a pity we know so little when POTS has been around for so long. However it is another can of worms that as a parent you have to appreciate and deal with the best way you can.
You can take an attendance officer, teacher and doctors to the diagnosis but you cannot make them drink from the fountain of knowledge and understanding of it. As you rightly point out no one is in a position to tell anyone anything.
However, I need something and so do 25,000 children along with their parents. They need a graph or a picture of some kind to show, as they say seeing is believing and at the moment my son and his struggles need to be seen. Our children need to be protected as there is a very forceful group of safeguard specialists that are backed by the Royal College of Paediatrics and Child Healthcare, convincing Judges, consultant paediatrics (they are taught how to be an eye witness in court for the child, the mother has no protection and a lot of the time the team of layers the parents have are not allowed into the courts as the Local Authority get to pick who is allowed in to court, as it is for the child's protection and not the mother/parents), GPs, Social workers, Attendance officers, teachers and councils that there is nothing wrong and it is the mothers perception.
There is no way of reversing the allegation parents are scared for life with the false allegations. No one looks into the damage caused to the family when this happens even when the child is returned. If they go into care there is no way of knowing if they get the proper care and understating and I am aware that for some that are just left to what I can only describe as fester, with a condition like EDS + POTS + ME/CFS that makes me shudder.
My point of the graph is not so much to show the illness for research or to show how ill my son is, but to show the delay in recovery. Trouble is he is not doing this quick enough at the moment so I can't show recovery but I do have years worth of how recovery happens. When my son bounces back you see a difference in the amount of time he spends in an upright position, his HR and BP stabilises. It will I hope show that this is a circle and a rhythm that cannot be forged by thoughts or feelings. I have nothing else but words and quite frankly words don't count.
When my son starts to come out of a PEM state he automatically and without being asked, gets dressed and springs into action. The downside to this is that depending on the domino reaction that takes time to come out to a PEM decline is just not seen by others just me. We don't know how long the PEM lasts either, which teachers don't like - they think I should know. I can't tell my son to slow down either, as this also has me sitting in the frame of FII on the grounds of holding him back. I have no evidence that resting helps. In short I'm scuppered.
You see a few years ago I could have taken him out of school and allowed him time, but in the last few years this makes me seem even more suspicious. I have no option other than to be compliant with what they offer as treatment (even if I feel this is detrimental I have no proof), keep him in some form of education and work hard at supporting good doctors, teachers, attendance officers, councils and researchers.
In the last two weeks we have lost over 15 children due to false FII (not all ME/CFS related) and these are the ones I know about. Even with a diagnosis you are not protected. You see it depends if the professional understanding the condition, being called MUPPETS (Medically Unexplained Physical Physiological (ET) Symptoms didn't help. Along with all the talk about activity management without proper control of subjective measures.
How can I fight all of this on Friday. I have no treatment to show the teachers? No treatment or biomarker, and no means of showing decline or recovery, so why would they believe me? They have been taught this no evidence means no illness. Many more children are going to suffer because of this.
Having a body Temperature that stays at around 35.5 on some days and then goes to a more normal constantly of 36. on others is not normal?
Neither is HR of 160 when he first stands up in the morning, or when he laughs?
What ever it is we need something to show.
At about 1.37: you will hear Leigh Jackman on the below Youtube video say there are 600 parents on her list they have lost 10 children in the last two days due to the teaching of the master class that is now endorsed by RCPCH. How can mothers fight this?
