Search results

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...

Thank you. It is very difficult to know if you are doing the right thing and most of the time I work on my own without the voice of reason which is always much needed. So comments on here are vital for me and even if you don't comment and just like it is worth it as it gives me the strength to...

100 %

And I do not blame you 1 bit

The rub is how do we get that to happen, any ideas?:) I have started giving talks at Cambridge university to 1st year students but it may take a long time to get to where we need to be. The other idea is the John Peel centre in Stowmarket a sort of lived experience conference which involves...

I agree with what you say about Alasteir Miller YouTube 2015. I'm also glad that you use the term ME/cfs for the reasons you point out. I think that the ME community need to understand the problems from a clinical point of view but the trust lost is hard to gain back. The other issue is how...

The problem with these articles they never reach the right place or used to demand change and that needs to change. There is no science that policy makers will use and we have to start to target that. in 1998 there was the same issues

We have to recognised where the term has come from and how it will be used by both medical profession and the DWP. As far as the CEP test goes I would pose this question - do we question those with Asthma? - There is no need for a biomarker to diagnose asthma nor do patients get questioned...