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There are no words to explain the fear I feel for all our children/young adults as the Government are ensuring support to get them into education or work. BACME and their lack of understanding is going to cause unprecedented numbers of accusations and with ME A accepting or ignoring FND as...

It worked for me but will attach the word document for you here

If you read my blog from 2019 of my open letter to McFarlen https://tillymoments.blogspot.com/2019/ is open on my blog but have attached the letter sent

There is nothing anyone can do when you are accused. A mother is not allowed any defence and her evidence can and mostly does get thrown out. This may help https://bilson.org.uk/home/fii_open_letter/ Have flagged his work and Luke Clements up many times we need as a community start to engage and...

This is timely letter considering recent times. You will have to excuse me as I only know how to add the link not the letter. https://bilson.org.uk/home/fii_open_letter/

Not uncommon and should be looked at more closely. The best documented case is this one, but it is now recognised as causing mental health issues the same with war veterans an brain injury caused. They are now looking at brain injury and autoimmune it was released yesterday issue

Put all the above with this load of twaddle https://cks.nice.org.uk/topics/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me/cfs/ and we have a melting pot of the dishonesty that @Jonathan Edwards described of claiming to provide care and progress. What I see from the above is a closed...

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...