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I'll try - I may have to come back and try again, so tell me if I'm not making sense. It's where I am alert and let's say someone asks me a complex question. If I go out to the chemist to collect your prescription tomorrow would you like me to buy you some apples at the greengrocer's? It's...

Earlier on & when less severely affected by ME, I could slowly rebuild and maintain muscle tone if I very carefully avoided aerobic exercise. Until I became severe enough so it was no longer possible. I find myself wondering if attempting to maintain muscle tone (& rebuild after setbacks due...

The thing with PEM is the whole of the thing is greater than the sum of it's parts. In the same way simply individually cooking & laying out all the ingredients for a complex dish - let's say a curry- and eating them separately does not in any way equate to eating a curry that could be made of...

The M3 device arrived today. I've already had a go & it's very easy to use. Also can be configured to store readings for two different people if that's needed (I don't). I'm happy with it. Especially as I got money off because there's a new model out. :thumbup:

This is exactly the problem in my experience. In addition, when at the doctors or being assessed I have found that people, sometimes with the best of intentions, put their words in your mouth. For example, I always seemed to end up with memory & concentration problems written in my notes &...

Thanks everyone for the comments on this thread. I've just discovered that if I give home machine readings they won't make me drag my carcass to the surgery for blood pressure checks. Nothing wrong with my blood pressure (apart from.when they wind me up!), but if I wanna keep my meds it's...

Didn't someone - Wessely, possibly Sharpe, recently use the fact he had ME and therefore a conflict of interest against someone? Possibly Keith Geraghty? I'm pretty sure I didn't imagine that so, no it's not just something that was said a long time ago, it was a tactic used to avoid addressing...

Can I ask - were you refused a prescription by a doctor or was the naproxen removed from your repeat prescriptions? If it was removed from the repeat prescriptions then I have been told they do this if the medication hasn't been requested within a certain timeframe. I can't remember how long...

I experience episodes of this as a consequence of PEM. It's the kind of wired but tired thing - SSRI's and the z drugs - zopiclone etc also cause this for me. I'm not stressed or anxious or necessarily worried about something, my brain just doesn't shut off. Sometimes, if it's not too bad...

I've not been in that situation but I would probably have lost that ability. The closest I can think of is during an overnight stay in A&E where I was constantly woken up and spoken to. I was feeling very unwell to start with so wasn't in great shape to communicate anyway. My husband was with...

This doesn't sound like the same thing to me either @Simbindi. The cognitive drain is fast but I would if pushed and pushed beyond cognitive limits I would lose the ability to think/speak or react. I'd probably also be too weak to physically stand if pushed that far. It does sound more like...

Before I understood how ME was affecting me it was much more likely to happen. As I understand better how my body & brain are likely to react in given situations I am able to manage it better. In the early days there was one GP appointment where I came very close to losing my temper so I...

I completely agree it's not psychological nor in any way anxiety related. When I was unable to shop because of lack of mental capacity but was capable of physically walking around the shop by my husband's side occasionally he would forget and step away from me. I would find myself alone...

Yes. I would say poor cognitive stamina & impaired cognitive function are probably my most disabling & frustrating symptoms. At a good point in time and in a good phase my brain can be as sharp and clear as ever for a very brief period. Decisions cam be made easily and quickly. Once I've...

Sorry, I misunderstood.

Yep. You understand that and she doesn't have to be cautious in her language with you. With my husband, these days, I don't have to worry so much about the precise word I use. In the early days it was a problem. He's also aware that my words fail me as my function wanes. However, the words...

I think his team have probably produced some of the best work so far. The snag is what are we measuring? Is it ME, PEM? fatigue as a replacement to Chalder's rubbish questionnaire? Or probably more appropriately, as @Barry suggests a suite of questionnaires with each patient filling in the...

As a group which has been so highly stigmatized because of how others have chosen to define us and then attempted to measure their idea of key features, it is essential that patient input is sought in my view. Even the very well intentioned can cause further problems for us because they don't...

I think it's a wonderful idea but a big undertaking. What exactly do we measure? Some (like me) object to the use of fatigue but others are happy with it. What we aren't very clear on is what the hell it is. So first I think you would have to define it, or as many different versions of it...

Me too. I don't think it is necessary to try to take a balanced approach and it irks me a bit that this is what seems to be the case from the MEA. We can't & don't try to offer advice on anything beyond ME and how it can develop and be made worse. So why not just do that? Why do our national...