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I can see where you're coming from & agree. However, with poor diagnosis using outdated criteria there are people diagnosed with ME who are not exercise/exertion intolerant. The risk of misdiagnosis is quite high. I think it was found to be 40%+ of UK patients referred to specialist services...

I'd rather he didn't in a way. If he were to come out and apologise then it would back to the militant ME patient narrative all over again. I would rather see a change of attitude than hear a "sorry". I can't pretend to have watched the series other than a brief snippet I saw via Gogglebox...

i believe we have to allow room for people to change their minds and opinions about ME. While I found RG's first "joke" about ME offensive, if all he knew about it came from the lazy regurgitation of SMC offerings then his views weren't surprising, though I agree he could have looked into it a...

In a way, this is what has happened with IAPT. We were used as a testing ground - the fact PACE successfully demonstrated they were wrong was glossed over. Remember when GET worked, but only worked if it was done by a therapist trained by them (not too dissimilar to LP practitioners in that...

Ah, but if you can get public services to pay for some of this training you can expand your customer base in all directions. Imagine if the GP could refer someone for LP as easily as to a MUS clinic? Then they can claim to be recommended by the NHS & maybe use their logo. This would...

I can't copy/quote it for some reason but in @Dolphin 's post #375 I notice they've slipped Chronic Fatigue Syndrome in under Psychiatric Complications for probable long term complications Nothing like accuracy. Literally nothing like it.

I didn't see anything offensive about ME in the clip. There might be other reasons why others might find bits of it offensive. The person in question is portrayed as being......suggestible. They apparently saw a documentary about ME and then thought they had it, it was horrible, they felt...

I know someone who is struggling with this at the moment. They will hopefully be switching to some a different type of medication soon which will help manage, but not cure. Several members of my extended family live with constant pain. Sometimes, when the underlying condition worsens, it...

In my own case, the "rules" definitely hurt. Taking naps as an example - I found I felt better all round & slept better if I had some bed rest during the day ( not all day but if I was up in the morning I would go back to bed in the afternoon) and if I needed to sleep, I slept. Everyone, from...

Despite claiming to have some knowledge of ME ,they never quite seem to understand it matters whether the horse is in front or the cart. Sleep problems are a symptom and not a cause. Sleep hygiene doesn't help (even hinders in my experience) because it addresses a symptom without considering...

Not only did PACE not adequately define and record harms but many CFS clinics don't either under the assumption that their treatments can't harm. This flaw has been propagated through the health care system, despite the overwhelming evidence from multiple patient surveys by AfME, the MEA & the...

Exactly. It's all about context and what level of anxiety, worry, concern etc is appropriate to the situation. Appropriate levels of anxiety or worry in the right context are a very good thing. I have some concerns about the risk of fire and that motivates me to install fire alarms. So far so...

Bolding mine. This is definitely true. In addition to wanting to give socially acceptable answers - - Patients may fear that if they don't respond favourably, or ro show willing/cooperation it may impact on further care. Especially if a negative report might be sent to the GP. - With benefit...

Really good blog. :thumbup:

My ME consultant liked my husband coming to appointments even though he didn't say anything for most of the appointment. I tended to forget bad patches, or think I'd been bedbound for a week or so when it had been a month or more. I think most of us are so busy focussing on ways of getting the...

? In my experience hospital staff have been excellent at "treating" my perceived health anxiety. Having an easily visible and recognisable problem the staff, on realizing I had a diagnosis of ME/CFS, witheld treatment - even though it was obvious I was in a great deal of discomfort and getting...

I am concerned. This is the second tweet that seems to imply she believes ME=chronic fatigue. I do understand that social media isn't the best medium to discuss these things but if the starting point if that chronic fatigue is ME rather than simply one symptom of the many that some suffer...

This is a really important point. For a randomised trial patients should not undergo the usual screening process & if Flottorp had a clue she would realise that. The criteria for entry should be a recognised criteria for diagnosing ME- preferably one of the better ones. Then those patients...

I know several people who have been more re less bullied by family members wanting them to do this. The old " if you really wanted to get better.... " Some expected to fund it themselves out of the tiny amounts of money they have adding even more money worries - not an inconsiderable harm in...