Search results

I think we need the data first and the SNOMED codes could help us there. We should as advocates know and understand them, ask them to be user friendly and accurate.

It always confuses me, the whole tomato, strawberry, potato, pepper, thing, they are after all part of the deadly nightshade family... so you would expect a reaction by the mast cells? After all they are the warning signs, and we should start looking at them as such? Can mast cells tell us...

As always, we start with confusion, opinion, and a determined effort to not accept the possibility and to treat. What are the long-term outcomes of not treating or diagnosing Mast Cell we don't know. My personal experience is that I have issues from time to time with rashes and skin complaints...

I have always disagreed with this approach because of what I have witnessed and what I have lived through. We should have been looking for the main patterns before research, not the other way around. I have written about these connections to family Courts, protecting innocent mothers and their...

I feel it is more complicated than just ATP Your first sentence in a way proves my point. So if your body is fighting flu like something then you would need energy for that? Or is the flue like something the hibernating state that has been explained before? So go to bed so that you can do just...

The issue comes when it is generally accepted that anyone can make a diagnosis, I kid you not. There is a process of challenging a diagnosis and for taking it away but it is not easy to do because very few understand the process or reasons for doing so. However, if you look through enough...

You mean like this paper? Frontiers | CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that We have to remember the science and understanding that it supports the idea of PEM. Those that are left caring on their young...

That is not the fault of the patient and it needs to be clearly understood that hiding or masking is not acceptable. Every dr should understand and accept PEM and brain fog, without exception. The reason we have such a hard time is because we do not speak up and tell the lived experence as it is...

It is Dr Vickers go to. He works in Cambridge and I have come across a few families that have been told their child is autistic but the families did not understand the diagnosis/reasoning. Understanding PEM/Brainfog is important because when out of PEM they do not appear autistic and when in...

I get your point I think, but I disagree with it; mostly because if you do not recognise the blood loss you end up in a spiral of decline an inability to carry on with activity and you loose more blood. The wound may heal with no intervention and you may never find it if that happens but if you...

That does not mean there is none, it just means we have not perfected a test clear enough or understood what we need to understand yet! That is important to recognise and accept but I feel we maybe close Why we must accept we see the signs but have no test is when you have a large amount of...

I think the words we need to concentrate on is "exertion" and "energy needed". We need to understand what energy is needed how and why and where we see the lack of it and then we can ask the question why? I have been asking the question - do we really understand what it takes to produce energy...

Why do you say there is no inflammation in ME?

Maybe we are not looking at all factors that cause PEM? I have noticed over the years of talking to many is that eating a meal can push a person into a deeper PEM state. It is not just the activity of eating but the unseen digestion that is important to recognise.

Just looked at the voting and I would like to see - Just veto CBT or any form of cognitive therapy in ME/cfs due to the behaviour of the research already done. Pending risk assessment gives them a toe in the door?

It is how MAGENTA and FITNET were used to coerce children to participate. At the time it took many of us to gently handle the situation to enable families to understanding ME and PEM and to sidestep the FII. I think I wrote a lot about this and kept most of the information which I can go through...

I think we need to keep bring up the MAGENTA trial and those quotes along with the FITNET/NHS trial, they need to be seen for what they were. If brain training does not support learning, why should it cure/restore health? If it worked we would all be world champions in everything we wanted to...

Just so I can get my head around this and I'm clear in what you are implying that "Maybe the surgeon washed his hands with purified water?". I hope they wore gloves when they operated. So would that mean if we tested others who have had different surgery's that this would also end up in the C1...

I understand but you must never dismiss the reality of most that live with the condition. Their truth is there it just needs to be seen. Family Courts are being tacked with this and along with Luke Clements, Fiona Gulen- Scott, Support not Separation and Parent Families Allies Network and others...

FOI is a good idea just to kick them into action but like you say it is the outcome that is important. What gives me hope and something to work on is the lived experience and how it is used, changing the narrative to meet an agenda is unacceptable but one we can show happens? This is heavy on...