Search results

I wasn't really thinking of patient groups so much. There are the physio's for ME, Dr's for ME and other charities although as you point out there are specifics as to who can complain so they may not fit either.

I'm having difficulty understanding how one would measure anger levels in anyone. I mean, from experience when fatigued or stressed -- people who normally would not get angry do. This happens with being ill. Are they more angry? The question is then -- were they angry in the first place when...

It does make it pretty blatant what health care is about from the POV of the provider. Health care in the past has been a money sink. But now in this new era money can be made through technology. One way or another.

I also find this observation of theirs interesting. It's an observation so open to interpretation. They are choosing to interpret the meaning to form a 'truth' that suits their needs. Yet the BPS cabal also get together with the exception of covid in this moment their gatherings would be...

Was considering the idea that it might be worthwhile if at all feasible -- to have multiple groups of ME advocates sign up to complain. That is if a complaint can be agreed upon. I think in general this should be what happens more often in as many situations as warrant it.

IMO just based on the fact that Cochrane do mata-analysis reviews I'd have to question that standard. From what I understand of these reviews it's garbage in - garbage out and no one really checks individual studies for the real world* validity of their findings. To name but one potential...

Thank-you @Midnattsol and @Noir The reason I asked was because we do have some threads here on the various questionnaires often used by this group. The word 'validated' may be true but not surprisingly implies validity. The Q / measures may be 'validated' by those who use them but are not...

Could you provide a link to that statement?

I take your point. On the face of it from the abstract it seems benign. However: I've been reading these things for nigh on a decade (or more) and the devil is in the details. For example: This study was performed using data from the Lifelines project, University of Groningen Netherlands...

Yes, it rather begs the question if there is maybe a mild prodromal phase to this and possibly other chronic illnesses that gets missed by the individual. Missing class time and slightly less stamina to do physical or mental work would reflect an altered education/ work trajectory for some...

I also think that these experts don't know what they're talking about and also think there is little evidence just a belief and desire to appear to know when there is very little that we really do know about the brain in general. When someone puts their hand on an extremely hot surface for...

Does anyone know how they will go about choosing patient participants?

I expect that this is all new territory for most / all of us here. I certainly don't blame the young woman for whom this is probably not an area of advanced knowledge and she's just trying to manage being ill. I think having an advocacy resource that people with ME can turn to (however...

If we are not there we are getting to the point where presenting information this way and using someone to highlight that information when they do not agree is a form of disinformation that should be actionable. There has been some movement in that area. Recently spotify with it's Joe Rogan...

One thing I picked up on from your conversation was that funding is generally inadequate. I think it would be overly optimistic to expect this to change soon. Recently there was a news item shared here somewhere that Mark Bonnar (bless him) donated some funds to ME (AfME I think). But real...

For those who might not follow. Alexandra Beverfjord is the Editor-in-chief of Dagbladet. https://www-dagbladet-no.translate.goog/pluss/bedrift?_x_tr_sl=no&_x_tr_tl=en&_x_tr_hl=en-US Dagbladet is owned by a Danish company -- Aller Media AS https://www.aller.no/

I had a look. The writer Mike Mariani is from Hoboken NJ. So not from the UK. It's probably safe to say that Ian Sample and the previous holder of the post Sarah Boseley are still engaged in upholding BPS propaganda at our expense. Just doin' their job.

There are books on neuroplasticity. One such would be Norman Doidge's "The Brain that changes itself." https://www.normandoidge.com/?page_id=1259 If we were'nt a group of cognitively challenged (energy limited thinkers) I'd suggest a book club to discuss this as it does have bearing on how...

Yes, as I said, I agree I just wanted to point out for my part that they pathologise everything. Sometimes caution gets caught up as worry. And worry isn't a problem unless the person finds it interferes with getting on with things. Being born as someone prone to worry is not primarily a mental...

That there should be a new white collar criminal code for torturing language?