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Does this count? I'm a pretty good navigator and I map read (proper road maps back in the day) very well. I had no problems translating my direction of travel i.e. north, south etc with working out whether I was following a route up, down or across the map. Then I started to get lost in...

It most certainly is all about him. In his mind anyway. It's only now that he claims to have been misquoted by some DWP official when saying that giving benefits to pwME just lead to dependency. Where was this correction over the last 2 decades when very ill people in dire financial straits...

In my experience some people seem to assume those with a disability have a fairly static or stable condition. Someone wheelchair bound with a spinal injury perhaps. Obviously there will be health complications due to that but, assuming those are managed, the condition and abilities of that...

I understand your call to protest/advocate/make things happen @MErmaid . I think it's worth having a dedicated thread - do we have one? We need to discuss what limits our efforts and figure out how we can work around those limitations where possible. There is another angle on this from the...

Yep recognise all of these. Some of the more obvious ones I forgot: Spatial awareness - cutting myself preparing veg, burning myself in the kitchen. The decision making thing is a real issue - when that starts I can't even handle a would you like tea or coffee question - even though I rarely...

I suspect that as the internet has become more widely used and patients found each other online, people have done their homework first and avoided certain docs like the plague.

Recognize @Keela Too's and @Skycloud's descriptions. Spatial awareness: missing shelf, table, countertop when trying to put an object down. Missing an object I'm trying to pick up - and knocking it over instead, especially if contains liquid :rolleyes:, unable to walk though doorways without...

That's beautiful @Robert 1973. I really like your voice.

I wouldn't describe mine as warm brain but.... Like you, for a long time I have tended to feel feverish, but with a slightly low temp. I also have Hashimoto's though. When I am suffering from PEM, or after even relatively short and light cognitive effort, I also experience peculiar sensations...

Bolding mine. I recently discovered that when I am not taking enough thyroxin my HR actually goes very low. So not only could the patient be experiencing something else which raises their HR, they could also be suffering from something else that masks it.

Visual processing, spatial awareness and short term verbal memory are all impaired for me. There is also a very significant dip when experiencing PEM.

As long as it's not used restrictively in diagnosing PEM - for all we know some people's HR rate doesn't go up. But then the chances are nobody experiences all recognized symptoms anyway.I Also I would not want people to feel obliged to buy HR monitors to test unless they were planning on and...

Now, who was it that suggested Dr Keith Geraghty suffered from ME himself and therefore shouldn't be commenting on others research and generally implying a conflict of interest?I Perhaps we could forward them a copy of this article? :whistle:

Hi @Medfeb. Because of our experiences here in the UK some of us are wary of having our words twisted, interpreted or misinterpreted. In questionnaires here questions have been worded to elicit responses that can then be interpreted in a certain way i.e. to indicate depression or anxiety...

The similarity between playground bullying and how ME/CFS patients are treated has always struck me. The bully (in our case BPSers) strikes to suit their own ends and others follow because they don't want to become the next target. People look at us and, I think, some small part of them is...

My understanding is that this thread is to do with how PEM is defined affecting all research which will be carried out by NIH/CDC. They aim to use PEM as a core diagnostic criteria and therefore we are questioning their definition of PEM in relation to how it may be used to identify those...

I understand the need to specify the variability in triggering PEM - may occur during the trigger event or up to 3 days later. Otherwise incidences of PEM may be missed. I wonder if it is necessary, within the scope of this exercise (pardon the wording) to specify the duration, other than to...

I am saying that compound PEM or multiple concurrent episodes of PEM: Exacerbated existing symptoms May cause dormant symptoms to flare And reduces the energy threshold that triggers PEM It can also lengthen the recovery from PEM This is my experience of it at least. I appreciate others may...

I think the one thing we can all agree on is that we are all rather different I, personally, think PEM can last for longer than 2 weeks. I agree that PEM and relapses are different, though they may physically feel very similar. However, I also believe that compound PEM as I mentioned above...

Thanks @Arnie Pye ! My posts are full of typos at the moment - I got a new tablet as a present and the bl@@dy thing does the weirdest autocorrects. I'm so busy correcting those I miss my own mistakes.