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Well most of those would look for Mast Cell type reaction with many who can define in individual patients what is needed. Binita Kane has done videos a good video looking at the experience of patients We have to look and be open to this because it is a very big issue as described in the video...

Yes they have, to my knowledge there is one place in the UK who follow the correct procedure. Does this help though? I think before we have trials we need to understand the subgroup where skin, pain and eating is a problem and find which part of the PEM cycle it occurs in because hormones play...

It is confusing and I do not think we have the right idea due to lack of searching finding and research. I have kept Angus or his been kept away from antihistamines but we need to look at those that have not and have had good results or not so good and make a distinction. There are natural...

How do you know skin is not inflamed in PEM in general? Has anyone asked the question while either in the GPs office or in research? Do people look for any of the changes to the skin for any reason while in a PEM state? Has anyone looked at the most severe the answer will be no. All red fruits...

You are right and patients do believe that healthcare is based on patients experence/symptoms. We should be able to look at other complex situations and conditions and work out what they mean? Diabetes, asthma, psoriasis, viral and all other infections show us the same as we find in ME, subtypes...

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.