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I share your concern. If funds are limited, focus should be on diagnosis, high quality information for mild pwME, not courses of rehab, and the money wasted on so called rehab for mild be redirected to proper services for severe.

I guess it depends how you define clinic. The point is there need to be services provided by the NHS for all severity levels. This may include an outpatient clinic for mild to moderate pwME, but also needs to include home and hospital services for those more severely affected.

I agree both did very well. Chris is very good at matter of factly stating what a serious disease ME is and the dire lack of research.

Then why the f*** did they fund it? I think Peter Gladwell's involvement as co-lead researcher is significant. He's very senior in BACME, and it will be their therapist members who will presumably decide whether to use the 'toolkit'. If Tyson and Gladwell can persuade their members to use it...

The idea I have gleaned from the initial announcement of this project and the comments Sarah Tyson made on this thread is that the toolkit is supposed to be providing resources to be used in NHS clinics as part of their implementation of the NICE guideline. It seems to be based on the model of...

My immediate response to the reply from Neil Riley is probably better not posted, but there are a couple of points I will try to comment on briefly. Apologies if this makes little sense, as I'm crashed. That seriously worries me, as it seems to be a significant expansion of the aims of the...

It looks like they are only going for the most blatant fraud, not poor methodology. The thing that amazes me most about this article is the number of people and meetings involved in producing it.

I haven't read the article yet, but this but from the abstract seemed all wrong: Surely if any single item is rated at major concern level they need to do a through investigation. For example, the main 2011 PACE paper should have been immediately flagged as likely to be useless because of the...

The first one says symptoms are things we perceive, the second says the perception is wrong.

Wessely et al did the same thing with CFS. He explicitly stated CFS is just new wine in old bottles, the latest fashionable name for hysteria, neuraethenia or conversion disorder. Does that mean CFS by your logic is a 'label stacked on top to make it palatable to patients? It does to Wessely...

That seems to be what the authors concluded.

It's not word salad. I enjoyed trying to get my one remaining mathematical brain cell activated to get an overview of what they did. The aim was to see if a particular form of mathematical analysis that has been developed for studying complex processes over time in other situations such as...

That makes sense to me too. I have tended to avoid getting involved in the FND threads because I don't have the energy to follow all the discussions and it's not an area of medicine I know anything about. I understand the reason some pwME are concerned about FND as a diagnostic label because...

I haven't listened to it. This is the blurb: "From ear-splitting aircraft noise and the drone of traffic to the hum of an open-plan office, the world around us can feel loud. But is it getting louder? And is this having any effect on our health - and even on how long we live? We find out when...

If FND was a label meaning you have clear neurological signs, but we can’t find anything on your scans that indicates damage to part of your brain or nervous system, then I think if I were diagnosed with FND I would be relieved to know it wasn't a sign of something known to be irreversible and...

I'm not sure what that waffle means. I assume it's saying better services are needed for LC.

That doesn't seem like a fair characterisation of patients with FND. Just as in ME/CFS, being diagosed and told the only treatment is supportive care is a huge blow when you are suffering from something you don't understand, and nobody else understands, and that makes your life difficult...

Some posts have been copied or moved to this thread: Functional Neurological Disorder (FND) - articles, social media and discussion

I think this is a fairly good, though superficial and uncritical, summary of what is known and not known based on a few of the main US sources of information, NIH, CDC, Mayo clinic. It's written by a PhD student.

I wonder how common your experience is. I don't think I've come across anyone else with that pattern.