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It's Twitter, it's the forum for shouting about injustices. I'm glad he and Todd Davenport post threads like this. It's so heartening to have clinician researchers doing some of the shouting for us. If this was all they did, I'd be concerned, but its not.

Thread: Blog: "The Death Threat Myth Exposed", Jennie Spotila

I wouldn't want to tell people asking what is wrong with me that I have idiopathic ME or idiopathic ME/CFS. Most non medical people probably don't know what idiopathic means, it adds nothing to my explanation of what's wrong, and sounds too much, to the uneducated ear, like 'idiotic'.

It feels like they deliberately take anti-science actions like inviting Shorter and giving Walitt so much power because they know it will upset people with ME/CFS, and lead to protests. Then they can spread the word to other researchers, don't research this, you'll get attacked by patients...

It's so heartening when clinicians tell it like it is. I just wish they had more clout with the NIH.

I think there's a huge problem with using comparisons between sick and healthy people with a visual analogue scale for fatigue. Two points increase in fatigue on top of 2 points already there, ie an increase in fatigue by 2 points is likely to mean something completely different to a 2 point...

I am not comfortable with over-the-top attributions of near criminal activity to the whole medical profession. Nor am I comfortable with people with ME/CFS saying the term FND should not ever be used, and that people diagnosed with, and content to accept the name, FND for their condition are...

The article is now open access. I think it looks like an interesting idea, though before recommending it for individuals to assist with pacing, research needs to be done on patterns of lactate levels in ME/CFS and how they relate to activity when compared to healthy sedentary controls. If it...

I guess they think they can claim it will be used from the fact that they are working hand in glove with BACME on it.

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.