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When I have worked out how to do this I will. It is exhausting. Like tracking a needle in a moving haystack. If you have ever tried to look through all the steps of who is who and what you need to know and what you should do. Wish me luck

I think it takes a lot of working out. The problem is I have to not only understand how the system works, talk their language do all that is required without coming across in a way they would find offensive to their sensibilities. In other words they can say and act however they feel fit without...

Thank you so much and it is much appreciated as feeling as though you are dealing with this on your own as a family it is hard. As Suffolkers has said it was shambolic and very unprofessional a bit like a comedy sketch that us mum's are very used to but are rather unbelievable. First off I...

Thank you Thank you that is great advice. I haven't been down the rout of alternative practitioners, as it took so long to get a diagnosis of Cecelia his tummy does not tolerate multi vitamins. I am looking into OT to help but at the moment they all recommend GET with CBT. In reality though...

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...

I did and have been posting. Professor Rowe came last year to point out the mistakes of not looking at POTS as he has for the last 20 years at AFME, but that did not seem to make any difference?

Bless Ya will keep you informed, if I am not gagged and bound by the FII they use as a weapon.

Thank you Skycloud I had as he has grown at a thunderous pace which they comment on. The POTS dr thinks this is because he is naturally controlling the POTS. I feel like a hamster in a wheel just going around in circles. I would like to take him to get checked out but at the moment he is too...

Yep When he was first ill they wanted to take him into hospital for a 4-6 week stay with rehabilitation methods of a tutor, lights and action without visits from me. My GP trusted the hospital and thought this was the best way forward. I got in-touch with Tymes Trust and Dr Speight gave a full...

In my experience any Doctor in any field that does not go along with the Biosocial model puts a mother under threat , so is a mother having opinion or asking questions, so I have learnt not to say too much or question them as this they take as a direct threat. I do however go public. I take my...

Fluff I had incorrectly given Melvin Ramsay hero status. Thank you for the history of the name now that makes sense why so many get hung up with the name. It is more than muddled. Wish we could start again. I know when I was at the NICE meeting this was a sticking point and we decided to move...

So we have cause and effect, but that is normal and although you get bursts of abnormal tenderness with a virus say (mine always flairs up when I get a cold sore) you get to know the difference? You get someone who is constantly looking at these areas you get two outcomes. They get blase and and...

So we have cause and effect, but that is normal and although you get bursts of abnormal tenderness with a virus say (mine always flairs up when I get a cold sore) you get to know the difference? You get someone who is constantly looking at these areas you get two outcomes. They get blase and and...

My son was 8 when he first became ill and was resigned to the fact that no one would believe he was ill and has often says in his now sarcastic teen tone "What do I have to do to make them believe that I'm ill, die?". He has POTS which they think of as Anxiety triggered, and even though he has...

I guess you have to start somewhere with unpicking the whole mess. I have to say ME people are the most abnormal, normal people. I do wonder how we would have found diabetes if Oskar Minkowski and Joseph Von Mering had not witnesses what happened to that poor dog? Would we have found out about...

I wonder why those points are tender in everyone? There has to be a reason - a cause and affect. Desperate is probably an understatement and can cloud our judgement that is for sure. Desperation along with hope can make a proper mess of the science. Asking and re-asking questions is a good...

Yes and they have been brilliant, but you cannot convince a Dr/Gp that something is wrong unless you have a biomarker. You can give the research but without endorsement of NHS etc they dismiss everything. A little empathy would be helpful but that is a very rare thing. We have been living with...

Just asking because I have been wondering for a while and being just a mum with a child with ME is the most... Well you know I have no where else to go to get understanding and answers. Dr Ramsay mentioned in severe cases acute muscle tenderness when with your forefinger you could detect minute...

Moderator note This post has been copied across and several subsequent posts moved or copied from this thread: Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk .... My son is now on a steep decline and because he is of school age I am hounded as a...

Why are they only reviewing 13 pieces of evidence? and how do we know which ones they are reviewing? Fluff a Duck how come they announce it this way ? In need of serious amounts of coffee