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I have experimented in numerous way to find a way to be able to do more. Pacing, task switching enforced rests at set points between or during tasks based on effort, rests for set amounts of time at set intervals, rest when I need to rest, pushing through..... The one way to guarantee I'll end...

Another point of weight is that when I am in PEM, I tend to go off fruit and veg and crave carbs. The way I eat now makes it very obvious to me when I'm increasing my carb intake because I don't eat many refined carbs these days. Earlier in the illness when my diet more closely resembled the...

Eh? Is it me or does that sentence not make sense. If no socioeconomic factor predicts the length of sick leave it surely that indicates that a person's income, financial status or security doesn't seem to affect how long they need for sick leave. If socioeconomics are playing, or can't be...

Yep and a mildly affected patient who is constantly in PEM may not realise it because they don't know really any better. I reckon I spent a lot of time as a moderately ill patient in constant PEM in the early days of illness. I just thought that was the illness.

Been there, done that 20 odd years ago. Made zero difference. But then I don't really count fatigue as a primary symptom so...... The Fatigue Impact Score is cropping up a lot in the last day or two, isn't it? Many of the questions seem problematic to me and I don't think it gives a fair...

I believe, but can't for the life of me remember the source, that the so called Indian variant was affecting young teens i.e. 15 and younger. Very worrying.

1st. Fukuda - well okay, I understand they want to.compare patients who experience PEM with patients who don't but still.... 2nd. CFQ - not suitable 3rd. FIS - not suitable as discussed in another thread recently. 4th. As @Snow Leopard has mentioned. PEM. What is it, is the researchers...

Again, I don't want to hassle you @Hilda Bastian but I am wondering if it's the case that you were unaware of the politics around patient involvement when it comes to ME. We are not your typical patient group thanks to the lobbying, smear campaigns and gaslighting that has gone on for so long...

Are you aware @Hilda Bastian that ME patients repeatedly raised Freedom of Information Requests over the years for access to the data from the PACE trial? Those FOIs were raised in accordance to the process and procedures already in place by the "system". For years these requests were deemed...

I appreciate activism from your perspective is not a negative nor pejorative term @Hilda Bastian & why should it be? However in our world the term has been used to smear & silence us. The label "activists" has had the effect of making it acceptable to ignore our views as unreasonable ...

FFS with the art therapy & journaling! Losing your job, at risk of losing your home, significant relationships & life as you know it mainly because of a decades long smear campaign by the very people who were supposed to help you and in order to help turn that all around they suggest art...

Absolutely. I know people who are fit and exercise /play sport regularly yet are still quite overweight. Not necessarily to the extent of being morbidly obese or anything but carrying at least an extra stone or more. It also puts me in mind of the recording made by Sophia Mizra when she was...

Thanks @Nightsong! :thumbup: Yep that would be a misleading and problematic one for me. My primary cognitive problem is loss of processing ability fatigue becomes apparent when I struggle on & keep.pushing harder to.make up for loss of processing ability. For some questions this would mean I...

Has anyone seen the Fatigue Impact Scale? We're all aware of the problem with scales/questionnaires that use vague terms such as "fatigue" or "tired" that can be interpreted in different ways by patients, interpreted in yet other way by researchers and then treated as though they are...

Thanks for mentioning this @Kitty :thumbup: I had heard anything about it. I opted out previously and my health authority also have a data sharing scheme within the region and I opted out of that as well previously. The link for opting out online (it's in the 2nd article linked in the first...

Some of the symptoms you describe with the legs are similar to symptoms I've experienced with ME - though it was much worse earlier in the illness when I wasn't pacing because I didn't understand. Since AZ or around that time I have had a lot more problems with my legs. The numbness, feeling...

I'm so sorry @Keela Too :hug:. So hard.

We often see papers here looking at depression as at least a comorbidity with chronic ill health. It seems the NHS and government/healthcare services elsewhere are prepared to spend significant sums of money on address supposed mental health needs of those who are chronically ill. However, as...

It's society's & our own expectations as people with chronic health conditions that frustrate me. It can often be self defeating. On more than one occasion I witnessed relatives of my mine who had been horribly unwell downplaying just how badly they were suffering to the doctor. This despite...

Why better integration of the speciality of mental & behavioural health over any other speciality such as endocrinology or gynaecology, for example. Primary care is primary care and (from the UK perspective) supposedly serves as a triage for those who need input from a specialist. Admittedly...