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Completely agree. I'm hopeful that if nothing else we could use the fact that the change in guidelines demonstrates that 1. treatments that are based on unproven hypotheses are experimental and there is no guarantee that they will work 2. lack of long term follow ups by the clinics means...

I'm quoting this out if context here as I know this was meant as the "establishment" point of view & not your opinion @FMMM1. I agree with you - from their point of view what's not to like. The problem is that patients may say they like them at the time. We know that very few clinics do long...

Is it though? For example, IAPT seems to be about providing therapists who have the least qualifications as possible. In my own case a medication I am on means I have to have regular reviews with a nurse. It's pretty straightforward as long as I'm not having any problems or ask any questions...

Isn't this all part of the next stage of the "plan" facilitated by changes to the healthcare service and the likes of Trudge Chalder and Moss-Morris? Indoctrinate the next generation therapists who are less qualified and less likely to ask critical questions than the ones who've gone before...

I can see that might be a confounding factor for some - I used to clench my jaw when concentrating and grind my teeth when angry or asleep. It can cause pain and headaches but they don't feel the same. I spent a lot of time with a great physio at one point & looked at posture,.supported rest &...

The irony. As Holger and his family have Christian beliefs and faith it amounts to evidence that Holger is delusional. Yet these doctors & the health authority have unshakeable faith in their own belief born of a hypothesis that is not just unproven but has been proved wrong by the PACE...

Yep, that's where I'm at with this. Rather than just plain old misunderstanding and confusion this has gone beyond the absurd. Surely this has to have been deliberately set up so that they can conclude what they want to conclude, claim they've covered as many different viewpoints as possible...

Brain fog is the reason most of my posts are as long as they are. Being succinct and brief is extremely difficult. I have an awful lot of headaches. I think I am nearly always in cognitive PEM or hovering on the edge at least. Physically there's a slight buzzing in the forehead, a feeling of...

Apart from my own inability to think straight and getting confused this morning's exercise has highlighted an angle I hadn't thought of before. When in cognitive difficulties I must behave unpredictably - I don't mean in an an emotional, might lash out kind of way, though I can become annoyed...

IM just discovered that I appear to have broken the banking app. :rolleyes: He just got off the phone from them and although our account is fine, there's a mismatch between the information displayed by the app on my phone and what the bank sees. IM's phone tallies with mine. The bank have had...

In my own case I don't think it's simply the brain prioritising one task over another, although I daresay there may be times when it does. It isn't about OI problems and being supine either, although at times they are a factor. This morning, for example, I needed to sort a problem out on my...

Wish I could give that post multiple likes. This "living well" business is insidious. The implication that it is wholly within the power of the person suffering chronic illness to change their lot.....simply by a change of attitude. This is seriously regressive stuff. Can you imagine the...

And that could backfire badly - Paul Garner being an example. We know the majority of people will recover in time & most of those that will do so will recover in the first year. By year 5 recovery for those still ill is very unlikely. We're approx. 18 months on from the start of the pandemic...

Laughter ups PEM levels significantly for me. Laughter is a very physical activity, I've found to my cost. I used to go on some retreats and we used to have a really good laugh, sometimes I'd be in tears. The following day, or the day after, I'd feel.like I'd been beaten about the torso with...

I believe they can. In a relatively good phase I can go for a walk with IM and be fine. We'll chat quietly as we go. Doing the same walk with other family members, even if we split into groups due to narrow paths, is a much bigger cognitive load and will exact a higher payback despite it not...

My experience is the opposite. Initially cognitive issues caused me as much trouble as pain. By the time I was diagnosed I was described as having moderate ME though I was still working. Ti a certain extent I could arrange my own schedule and it was possible for me to work from home...

I think this may well be true for some but is a dangerous assumption for others. Both cognitive exertion and sensory stimulus can trigger worse PEM for me with a longer recovery period than physical exertion, depending on the physical exertion of course. Although PEM from both physical and...

I don't think that's universally the case I'm afraid. I think certain parties are already gearing up the BPS machine for those who fail.to recover from LC and it is certainly possible that if they haven't pulled their socks up and recovered within a year or so they'll find themselves at a...

I share the concerns raised by others. I know it sounds perverse but I would rather money not be spent at all if it's spend on the wrong thing. Expenditure on a pointless or poorly designed study allows the illusion that "something" is being done while conveniently ignoring that sometimes...

All this talk of individualised treatment makes me wonder. As far as I know - & I may not be right in this - one of the reasons NICE were set up was to regulate not only efficacy & cost effectiveness of treat but also treatment safety. If I am correct in my recall, part of this was in reaction...