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The BPS need a silver bullet - shot from the biomedical research gun, metaphorically speaking. They won’t stop or change their thinking, they will do a sideways move. But their glory days are over.

Maybe it’s it the video

I can’t remember, I think the one to explain why the 1 year delay. They have transcripts so it will be in there I think. To be fair I think the presenters kept getting caught up in how everyone worked so hard it wasn’t anyone’s fault it was going to be delayed, but it was getting in the way of...

I feel like there needs to be a type of “style guide” for ME which journalists/newspapers have, except we need our charities to follow it first. information needs to be concise- seems obvious but needs pointing out. The starting point should be “how can we make this compact, short and to the...

lol Especially as there’s always admin errors

We don’t even know which patients from the North Bristol clinic contributed to the Care and Support Plan template. The patients themselves don’t know. For all anyone knows, the patients may have all said “this is rubbish, I hate it” how would anyone know? There’s no due process. In fact, the...

I know, right? They could just start off slowly and then gradually update their skills and knowledge from its baseline, by 10% ant an time, until they’re up to date. It’s not hard.

Is part of the problem that they’re based in Bristol?

They’ve made it clear they don’t wish to discuss.

Just posted on another thread by SNTGatchman, this Canary article about AfME withdrawing the “Care and Support Plan” template created by Peter Gladwell. https://www.thecanary.co/uk/analysis/2024/09/04/action-for-me-cfs-care-plan/ I note the article references an ME Action survey on NHS ME/CFS...

Ah. Visit the baker, you come away with bread.

The thing is, the situation changes over time. The trust which had no services in 20/21 referred me to the neighbouring trust. They took a year to see me and refer to SALT but then asked to see me in 23 and I hadn’t been referred. The second trust wasn’t happy about me going out of area as the...

Oh, so the OTs make the diagnosis? And of a chronic pain disorder, in a CFS clinic. How misguided.

I probably meant refer to counselling rather than psychiatry, I just meant yes, they dismiss you as having mental issues rather than physical. I’m naturally an extrovert chatterbox and would talk people’s ear off, given the chance! Pretty sure it’s not an stress/anxiety/depression issue...

Thank you. I’ve been seen by a lot of ENTs who have said they have referred me for SALT, however there hasn’t been any SALT appointments because there were no services. I’ve seen ENTs for a camera up the nose 4/5 times, they all referred me for SALT but there never was any appointments or...

Wow @karenkirkel that’s so helpful! And yes, I think I have picked up bad habits along the way, which is one reason why I’d like SALT butI’d forgotten, so that’s now on my notes to raise at the ENT appointment.

Reading between the lines, “the Board” considers relationships and I suspect that there’s a relationship at that level with Gladwell that is above Sonya’s pay grade.I think he’s been involved there since before her tenure.

Wow, I’m shocked but also very pleased and reassured. I won’t tag Trish as she’s crashed but massive virtual Pat on the back for doing the letter, which was a mammoth task, and sending it off. Really reassured to hear this from Sonya.

How do you get involved in it? Nobody has ever asked me and I’ve never seen an advert.

None of the ENTs who have shoved a camera up my nose have seen any problems. My hoarseness comes and goes during the course of a day and then deteriorates when I exert myself, I don’t really have any of the symptoms of silent reflux so I don’t think it’s that.