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One thing I found invaluable when applying were the guides written by both the MEA and AfME The UK ESA paperwork has tixk boxes and then really quite small boxes where you can add further details about why you ticked the box you did. It would be very easy to just go through the form if you...

My husband (IM) found himself doing the same. The subject came up at work when the wife of one of his colleagues was diagnosed in her late 50s and had to take early retirement. My husband mentioned I'd had it for decades and other colleagues were curious. I think he finds the stereotyping...

I live in the South East of England & apply with the diagnosis of ME/CFS as that's what is on my medical records. I mention other co morbidities that affect my ME on the forms but the condition that prevents me working or .living a normal life is ME. I would tend to go with whatever is on your...

Of course the patients Millar et al do have contact with will be in a position where they'll need to keep the clinic onside for fear of upsetting their GP and because they'll need letters of support for.employers and benefits agencies. So those patients within their orbit of influence will tell...

Some docs ask this kind of thing out of ignorance but I am equally sure that the more experienced ones ask this sort of thing in this sort of way deliberately. It's one way of working out if you're being truthful and how badly impaired you are. If you weren't living with, or living with...

Another potential issue with this type of cr@p. The researchers seem keen to find an association with the imagery of shopping bags and cognitions that trigger fatigue. In the rush to jump to their conclusion they forget about all the other mental associations people with health problems might...

The reverse is also true - cognitive impairment can be extremely stressful, which accelerates the deterioration. Dealing with anything official with tight deadlines can be a nightmare at the best of times, but if you're in a bad patch.... Along with the pressure that you know if you eff it up...

Of course a healthy person might think "oh yeah, grocery shopping. Boring.". One of those things you would rather lounge on the sofa reading a magazine than do or the more sporty might prefer a swim or a jog. It has to be done so they do it. The person with limited energy and stamina who...

Probably not. If there is an "expert" or clinic in the region then the GP would probably refer on for formal diagnosis. If the GP hasn't already referred you on or the referral might take too long then your employer might request that you see a specialist of their choice. I say request but...

The patients tell you? Then you can discuss it in further depth...are their symptoms improving, can they do a bit more without payback etc. The return to work or school business can be too easily gamed to make the numbers look good. Bums on seats just mean you actually managed to get there...

Do an imaginary task, imagine how it might induce imaginary fatigue...... And there was I thinking unblinded research without objective measurements or dropped objective measurements had already set the bar as low as possible. Turns out there's a whole new level an ant couldn't even limbo...

I hope so.....but even if the actual guidelines aren't much different than the draft ones we'll still have our work cut out for us. A change in guidelines would be the first step and certainly give us some leverage to get things moving in the right direction but still an awful lot of heavy...

That's precisely the Catch 22 we've been stuck in. While it was "just" patients speaking out about harmful treatments and so on doctors wouldn't listen because it was part of our "delusion". No one else woukd speak out because they didn't know what was going on. Why would they believe...

That's the weirdness of ME. Quite often it's not the strength involved or even stamina when I'm doing something that's the killer - although they are factors. It's the number of repetitions of the same action, even if the action isn't that fast, doesn't affect breathing rate and doesn't...

That's a big part of the problem here - that guidance & support is is lacking. Not telling the patient the truth (& being truthful doesn't mean you have to go terrifying people unnecessarily) is not going to.compensate for that lack of guidance. The lack of guidance is probably partly down...

This is where patient support is so important, as important as a truthful & preferably sensitive prognosis. Some might fall into despair. Some might be experience denial. Many will vacillate between the two. Decent support would help patients cope and, hopefully, minimize any damage done...

I think an experienced doc may have some idea but there are never any guarantees. The unknown prognosis also just leaves someone in a limbo of uncertainty. There will be some who would cope better with the knowledge of a poor prognosis than just being left with a great unknown. Leaving it...

There isn't but on the other hand an "I don't know" from your doctor cuts no ice with your boss, bank manager, DWP etc. People need to know because they need to manage the situation and sort out their finances to plan for the worst while they hope for the best. We can't have it every way...

The thing that really gets me is they way BACME & the rest of the BPS crew constantly get away with avoiding the main issue. Here they go muddying the waters by discussing yet another hypothesis. The original hypothesis was wrong & there is no evidence the "new" one is any more accurate. The...

I can see both points of view @Peter Trewhitt & @Perrier. On the one hand if we aren't open with people from the get go when their approach to managing the condition is most likely to have a good long term effect, are we not standing by and letting them get hurt? We might possibly be condemning...