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Yes, I used to struggle with both pen grip and writing the letters in the wrong order due to cognitive problems. I'm not dyslexic - this problem only started after I got ME. Now my cognitive problems have improved I don't mix my letters up as much, but I still struggle to hold a pen so my...

An online session, while a great idea, is not as accessible as a survey and will reach a smaller audience. Could you do a survey as well perhaps? Because if you are asking for the views of people with ME and their carers, a survey can be answered at a time that suits them, at their own pace...

It would be good if they put out an online survey so people can give ideas as most people won't be able to go to the meeting in person.

I don't know how to say this tastefully (sorry), but I think Dr Myhill peddles pseudoscience. Whether that is her intention or whether she genuinely believes she is helping, I don't know. But her website is full of unproven and potentially dangerous recommendations, simplistic statements that...

Curiously my ME has never caused headaches. I do get mild headaches now but they are a side effect of my POTS medication. When I'm not medicated I do get a horrible inflamed feeling in my head though, which is triggered mostly by sound and is extremely uncomfortable - unbearable. It's not so...

Having just tried corticosteroids, I am wary of research suggesting that low cortisol might be causing ME symptoms. My reaction to a relatively low dose of corticosteroids was very bad. It made me feel like I was in a constant inflammatory PEM crash, and gave me horrible psychiatric side...

My experience has been that adrenaline provides a temporary "boost" (as it is designed to do e.g. during fight or flight) but that in the long run it's very detrimental to ME. This is just from personal experience. I haven't taken adrenaline, but during a long period when I had to hold down a...

Good luck, I hope the doctor can provide some useful suggestions!

I used to get a similar symptom. It was POTS-related blood pooling. Legs were not obviously swollen but I felt pressure in my legs as if they were full of fluid. I have found three things that helped me with it: 1. Lying with my feet up against a wall provided immediate relief. But this is not...

OI definitely contributes to my crashes because since I've started taking medication for OI I crash less. However, going to appointments is also very exhausting because it takes a lot of brain energy to process the sensory information of being outside, the journey, being in the waiting room...

Studying has given me purpose too. I was in the first year of my PhD when I got ME, and I haven't stopped studying since. When I haven't been able to work because of my ME, I have found that studying gave me something positive and interesting to focus on. It has obviously had to be adapted to...

Thank you very much for clarifying, and glad to hear that there are several options. I would personally love to do this study, but I haven't finished my BSc yet and unfortunately do not live in Scotland - otherwise I would have applied! I am guessing an application from somebody with a PhD in...

It's part of a PhD programme which has a big patient and public engagement component. I think the idea of the programme is that the PhD students will get training and experience in both 'hard science' and the 'engagement and impact' side of science, which is increasingly emphasised by funding...

I think it's important to recognise that not all bacteria and viruses are the same. Many are harmless, some are pathogenic, some we get exposed to at an early age and develop natural immunity, others live on a percentage of us (e.g. meningococcus, staphylococcus) causing no harm but if they...

Surely vaccines don't affect immunity to mono, because there is no vaccine for mono. Whether or not someone gets mono in college is related to whether or not they were previously seroconverted. When seroconversion happens during childhood, this is usually due to exchange of saliva e.g. sharing...

It looks like the project is proposed as one of a pool of potential PhD projects. Students apply to the programme and once accepted, who will do which project will be finalised. Perhaps by then they will have heard back about the GWAS funding, and if they don't get the funding, a different...

Oh thank you for clarifying - I am pleased that I filled out the questionnaire correctly then. I agree, the Biobank team are always extremely helpful.

I can't remember which scale it is, but it's the one that asks whether you have been feeling 'in need of a good tonic'. It always makes me chuckle because I think 'yes, I could do with a good gin and tonic right now' ;)

This is a good point, I think the questionnaires need to be clear about what they are asking. I remember when I was filling out the CURE ME questionnaires, one of them was asking 'how often do you experience 'X' symptom?' and then I had to choose 'more than usual', "less than usual', 'same as...

I think the research team curating the data would have the right to screen applications for quality. I am pretty sure that's what the CURE ME team do. So if a crappy BPS study was proposed and wanted data, even if it had ethical approval I think the GWAS team would have the right to decline to...