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We have to look after out own medical needs as we are very neglected. It is perfectly valid to make your own passport or have a card or a medic alert. My grandson wears dog tags which explain he is autistic with severe social anxiety. If medical staff are caring they will be glad to know of any...

Wow! Viruses are scary things. When medicine started believing that psychology was the important cause of ill health and not viruses they took a very backward step.

What they have shown is that the questionnaires they use cannot distinguish between psychiatric morbidity and common signs of disease.

Yes, I worry about anything that mentions alexithymia which is just depression that did not reach a high enough score on the questionnaire! It is very easy to answer these questionnaires in such a way that they take the physical symptoms of disease as signs of emotional disease. It is difficult...

The fact that Chalder designed a scale and people are willing to use it with "as usual" as part of the question means that they implicitly believe this is a short term disease. They continually repeat that most people recover, and imply that everyone would recover if they followed their...

ahimsa said We seem to have been saddled with this as the description of PEM, even by ME doctors who should know better yet it should be included that problems can be delayed and prolonged but that seems to have been dropped along the way. A worsening of symptoms like pain or fatigue after...

My friends with MS find that the MS nurse is better at helping them with the odder problems than the doctor but they also get more symptomatic care because they are more likely to be believed than us. Ironically, most of them would like help with fatigue!

I wonder if they really mean ME or just 6 months fatigue? Some patients talk about thinking they are well, going back to work and only lasting a few days before collapsing again which is classic ME. Interesting to know if the paralysis and vision problems and all the weird things in ME are...

I think it is over four which is ridiculous. Derek Pheby asked for money to find out what symptoms people with ME actually had but he was refused and we got PACE instead. Most of our troubles come from a complete lack of understanding of patient experience so it can only be good for them to try...

If their treatments worked we would all be clamouring for them.

What surprises me is the offhand references to some patients claiming they are harmed by the treatments. Why did no one care enough to see if it was true? Many treatments cause harm to some people but the risks are examined and minimised and patients must be told about them. We feel like the...

As Arnie says your GP misses that fear can be caused by processes going wrong in the body too. The biggest problem though is that the doctor infers the presence of fear by the high heart rate. If the BPS were treating people who felt they had anxiety or depression in need of treatment that...

Having an insight into the thinking of the guideline committee here it is easy for us to find out why some things were put into the final guideline but hearing what patients have said on other forums and reading the statements from the clinics and so on it is going to be possible to...

A paper by Julia Newton looked at all the patients at an ME clinic and found that 40% did not have ME but another disease some of which were treatable. The figure comes from that. I can't remember it making any difference to the clinics though, they still continue to see patients without...

I'd forgotten. Years ago I kept a pair from when I was in hospital and they worked great until they fell apart! My daughter got a fancy pair of compression stockings to wear as all the other nurses on her ward use them to stop aching legs. Maybe Santa will bring me some :)

Many vulnerable groups are also the ones who have the lowest response to the vaccine becasue their immune system is not very good. It is obvious the vaccine is working because the absolute number of infections now is higher than last year at this time when we went into lockdown, but as you say...

"Practicing mindfulness can also help people learn to pay attention better, and Budson said that he is "a big believer that people can improve their ability to pay attention.” According to Wessely people with ME pay too much attention to their inner workings so they think that normal bodily...

The problem with vaccines is that it is easier to see a bad reaction than it is to see the good they do. I realised that deep down, I truly believe I will not get covid. Despite living in an area where the rate was 500 per 10000 I only know a couple of people who have got ill. That number means...

I got the impression it was people who believed in MUS who felt it was one of the ways MUS sufferers showed they were not like ordinary patients. Listening to people with MS talk about being diagnosed I was struck by the fact that so many of them agreed that they knew they had MS even before...

I cant follow the science very well but one of the strange symptoms of my ME is pain in my lower leg which is relieved by my husband squeezing it tightly with both hands starting at the ankle then working towards my knee.