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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...

My first draft of the letter to all Excuse the round robin approach but as you can appreciate time is short and my caring responsibilities increase at this time of year. I have been an advocate for those with ME and PEM for the last 10 years. I was involved in the new NICE guidelines and the...

The commissioning group in Suffolk, the MPs CEO's of all three hospitals and anyone else I can think of. I was asked at a presentation I gave at SNEE (Suffolk and North East Essex) how to make sure the services commissioned, showed that they understood ME and PEM and it is the same with this...

I think the biggest thing is the "further evidence of having ME at the bottom". I am now compiling a letter around that and in the New Year will be holding them to all of it. I did not have time to read in detail all that was written as I have learnt from experience very few if any medical...

I would if I knew how, will look into it but what would be better? I often put too much on. Now looking at the released the cross-government plan just released. I think I could work on showing how they confuse the words on there using the slides. Just sitting down to tweet this so here goes my...

There is enough evidence all logged, the recording of Sophia Merza in the film https://voicesfromtheshadowsfilm.co.uk/welcome/reflections/ to state that it happens on a regular basis and not just in ME or very severe. They are still working on Carla and a few others that I know of. We also see...

Spot on, it is all in the words they use and how they then use the meaning. I think @Jonathan Edwards is right "Multi disciplinary" and "complex multi system disease (or anything like those words) can mean complex mental health only or FND in other words. It is something I am thinking about a...

The other people to talk to are legal firms. It is never used in data collection and perhaps we should start looking because having a good conversation with them and hearing their experience, gives you a whole new perspective on things. Nothing will be perfect what ever we do, humans are...