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So when the Government state that they are going to use education is this what they mean? BACME are not to be trusted who is making sure their work is up to the required unbiased, no stigma and what we live through https://bacme.info/event/bacme-conference-20251017/

Ive put this on the research thread too but this is why we are finding it difficult and keep going around in circles. Civil Servants are given information by several people we know Simon and his clang of merry people are involved. If you had to go through all the information without biased...

They still hav3e not released the plan. So is this new or is this an old version? I was given a 2023 version which showed that the research has to be fair for all (who are the all ? the likes of SW?) and does not bode well for improvement in research which then means no provision of services.

If the plan was built on this and this is what we can expect from the new plan we are in big trouble. Is this why we are seeing more CBT and GET research coming out? What basis do they think they can build on research wise?

This is appalling https://assets.publishing.service.gov.uk/media/64fb00431886eb0013977003/ME-CFS-delivery-plan-easy-read.pdf

It is darker than that sadly. The reason why I have been publicly calling out the ME Association the two opinion pieces by Neil are there for a reason and so are all the others, some of the so called patients who say the LP works are in fact Drs who work with the LP or fake accounts with no...

BACME are a real issue and we need to understand their involvement with ICB and the ME Association. They clearly have the ear of the Civil Servants who gather the data to inform the Government. There needs to be a clear path of who in the Civil Service orchestrates who give the data, how and why...

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...