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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...

I think there is more work underway, which is good to see. Sadly not many answer the questions posed to them but a good start? It has taken such a long time and effort to get this off the ground. As you read here other factors do matter and should always be looked at, it is the only way to see...

I haven't looked recently but they are well known to be wolfs in sheep's clothing. You have to look deeply into how they use their words/phrases and what they mean, as many will tell you. I think the bigger problem is BACME and their roll out by the NHS, along with FND clinics which seem to be...

But ECT has been used for a long long time so there is no excuse to not understand the impacts good and bad and why! We know the bias by mental health professionals is huge we need to ask the right questions and some very brave mental health professionals are asking the right questions. What...

Sadly my experience with a family member was not so good. To give a treatment without tracking all outcomes and collecting the data is wrong. To do it blind and without understanding how the brain functions while or after treatment is confusing to me. To not understand the changes it made for...

There is most defiantly a Pem state and we need everyone to understand this. The lived experience should be at the forefront of our understanding and knowledge, that is how illness works, you have symptoms and you measure them. Just because we know certain symptoms belong to a disease, does...

It seems to me that PEM (or what ever you want to call it) is not understood, looked for, tracked or individualised so that understanding of the core issue is seen. There may be 101 reason why PEM starts and once in a PEM state, there is a build up of symptoms that should be clear for all to...

I can't read the paper, but how can this happen is the question. If it failed before and the person was in the elderly bracket why would they try this treatment. This treatment is a first line treatment for psychotic depression? Well it had been going for years with no impact on good outcomes...

It is how they look at symptoms such as the Functional dizzyiness pain fatigue and movement you pick out how they can use this to explain classic EDS/hEDS without taking the time to look at joints, gut allergy. FND is a gatekeeping hold all hide it away causing long term harm. The GP toolkit...

I have been stating how children and young people are abused in this way for over 10 years now and it should come as no surprise they are going forward with the full support of the NHS England. There is a big push to get FND centers in all hospitals and I think they have achieved that, I stated...

If you look at the NHS FND list you will find it on there. Each hospital now has FND clinic. So even though you have other conditions they can still get you Functional neurological disorder (FND) | NHS inform | NHS inform

The visible app might give some good data on pacing and perhaps this can be adapted to factor in "not trying too hard" Pacing is complex and individual and we have a lot to learn from listening intently to those individuals doing it and looking at the data. There are days when Angus has to...

I need to work on getting a message across to Patient Participation Group at my local GP for young people with ME and PEM and CEOs to start to get the message across of how to communicate from professional to professional (MDT even between profession to professionals it is hard work) advocate...

Well I am rounding up the wagons so to speak, CEOs of Healthwatch, Co production and Commissioning, MPs and councillors with a couple of Charities that have more to do with education, disability and those that are showing Fabrication or inducing illness (FII) has no foundation. Joining all...