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This is really useful.

In general, the more I write, the less I usually care about edits. But creative writing is always more personal that journalism, marketing copy or PR, so there rightly is a different attitude towards that. I usually accept most edits, unless I feel the editor is dumbing me down or writing in...

As a writer and an editor, I haven't taken any offence here. There are bad editors. There are good editors. Some editors really want to change everything you write so it's written in the same way they'd write it. Some editors appreciate that individual style is an important thing to maintain, so...

I took it to mean that you should use the 'products' category instead, as there isn't one for behavioural treatments. I may have misunderstood.

But at the same time, they're expected to support their constituents, regardless of who those constituents are. You can't fault them for supporting the views of those who support them, rather than those who do not. I don't think it's helpful to ignore AfME's supporters as 'not real ME patients'...

Hi Clare, I'm pleased you'll consider that. I understand that point of view, too, but I think pwME wouldn't object to a bit of jargon-busting and careful consideration from a trusted source. The ME Association does this, for example, with their own write-ups of major research as it comes out...

Nacul is on our side. I think the diktat against actual helpful treatment is from the BPS brigade, and is presumably to limit him. If he does well, they might need to accept the biomedical model. This way, they can sabotage him from the start.

Thanks, Clare. One of the issues here, I think, is that if you're not informed about such documents, it might be too technical. Thus people may not immediately see any issues because they don't know what they're looking for. I think a smarter way to have gone about this is to first dissect the...

That last paragraph caught my attention. So what can he do? Advise on supplements and pacing?

I know of at least one ME patient whose doctor has labelled them with atypical MS so they can access treatment easier. As I understand it, there can be both oligoclonal band expansion and white matter hyperintensities consistent with diffuse demyelination in some ME patients. Whether that's...

The NHS seems authoritative if you don't know the issues with NICE. So updating that website would be really helpful, as would Wikipedia, but again, I think that's why ME-pedia was set up: because those websites are so poor.

Wix is really easy to use when it comes to designing a website. I actually started making an I Want PrEP Now kind of website a while back using it: http://respectforme.com. I need to update it, though, as I wrote it long before here I came here, so there were gaps in my knowledge. The mobile...

It's an idea. It would need good SEO and high reliability. That means you'd want other websites to link to it. Getting a Wikipedia link to your page is one way to do it, but I think that would be nearly impossible, since it's being squatted by idiots. The other thing to do is get charities to...

There's a big 'WHAT IS ME?' button on the homepage that links to this article, so it's not tucked away. That's probably as clear as it's going to get without a landing page dedicated to just one thing.

I used this website back when it launched. That they test the pharmacies for quality and reliability was a major plus at the time. Something like this could work for ME patients, but first we'd need a drug that worked like PrEP does. If you take PrEP daily, it's supposed to be as much as 99%...

According to Wikipedia, at least, it 'is no longer included as a diagnosis in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders'. If even psychiatrists aren't using the diagnosis any more, it seems a stretch to assume this is anyone's 'true' diagnosis...

I want comprehensive neuroimaging studies, to once and for all replicate (or dismiss) the PET findings, plus earlier findings such reduced blood flow of the brain stem. Then I want all this compared to other neurological conditions, so we can see what's unique and what isn't.

The other thing to bear in mind is that even CFS is indexed to BME/PVFS (G93.3) in the WHO coding. The only way he could possibly be right is if the patient has long-term 'fatigue syndrome', which is different, and is F48.0. But why would his new diagnosis override the diagnosis of public health...

A good massage might be therapeutic, but I suspect many patients can't tolerate them (even the gentlest forms).

The WHO expressly forbids dual labelling and BME/PVFS (G93.3) is excluded from neurasthenia (F48.0) and vice versa. The WHO coding is binding here, and should be there too. So he probably loses on a legal technicality.