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It could do but is there research saying glucose is actually bad for patients with ME, or even could be harmful? All I remember is issues with pathways and some people then saying that means protein is better - but I’ve always struggled with eating protein, and I’ve seen accounts of Pw very...

Unfortunately things like ensure may be the only thing that some severe ME patients can tolerate. I have lived for months at a time, or even possibly over a year, broken up by better days, just on those liquid milk foods plus fruit purées. Also some people with severe ME cannot digest / tolerate...

My friend gets a prescription through a hospital dietician, I think, who is part of her gastro team. She doesn’t have ME though. I’m still trying to find a good meal replacement / nutritional drink that I really like. There used to be a company called Bam, which had wonderful tasting milk...

From what I remember there were 9-10 months till the expiry date when I last got some - probably not more than a year. I think that’s similar for other nutritional drinks too. I googled it & ensure can be kept in the freezer though - so that probably prolongs it’s life by quite a lot, although...

I wonder if people with mild / moderate ME could also benefit from nutritional drinks like Ensure prescribed on the NHS (by a dietician?), not just those with severe or very severe ME? They have lactose free ones as well, as well as ones without as much sugar. I’ve always had to buy my own, and...

An NHS prescription should be free (if on benefits and eligible), or the usual NHS prescription charge (£9.35). The several hundred pounds should only be for private prescriptions as need to pay the medication costs. And yes I think for pain, when I looked into it, costs were around £150-£300 a...

I think I’ve only been to a dietician once, (if they are the people in Hospital settings?), before I became ill. But since I became ill, no one has mentioned seeing a dietician. I’ve only seen nutritionists via Skype / phone (I decided to see them as other patients said it would be good)...

I looked into this a while ago for my pain. I think the current NHS rules is that while Hospital specialists can prescribe if they think there is sufficient proof of efficacy for cannabis for that particular condition, in reality they don’t really prescribe because they tend to follow NICE...

I’m pretty sure I had a thread about this a year or two ago on this forum. Mine came up with a few results for severe genetic illnesses, including one which causes cancer all over the body - despite none of my family having a history of cancer. I then went searching for articles from the...

Yeah. :) I hope though that before the dieticians finalise their advice / programmes, that they get the input of those with ME and speak to professionals who have done home visits for those with severe ME (ie CureME team) first. One difference between the rest of the population and PwME is that...

Yes, there’s so many amazing things in the draft, it’s a complete change of attitude. There’s so much more compassion shown to PwME. Things like - PwME may have encountered disbelief and prejudice and be aware of how that affects them. Children having unpredictable symptoms of ME is not abuse...

I’ve only just realised that in the guidelines it says to refer to a dietitian specialising in ME/CFS if they are losing weight, at risk of malnutrition or have restricted diet. And to send all PwSevere ME to one. This is amazing! So hopefully theres going to be specialist dieticians within each...

@ukxmrv yes for sure there are other things going on with you too - it’s just the head parts which I quoted above which fit with what I experience as migraines / severe headaches. I’m not surprised about the wait list at all. I have heard the NHS wait list for the specialist headache clinic in...

Hi, @ukxmrv, I know this might not be any consolation and only you know your symptoms best - but what you have described above which I’ve quoted, are symptoms of my severe ME, and have been described by the headache doctor I saw, as migraines and chronic headaches for me too. It may be that the...

I had my 2nd Astra Zeneca last week, it’s much better than the 1st dose. I noticed the same increased symptoms as last time, just have been much less intense, although some symptoms are still lingering.

Hmm. This is exactly the opposite of what I experience. My head does not want to flop onto a pillow or do nothing. That sounds more like a problem with motivation to me. I don’t have any problems with motivation or with my head like that - if anything, my head wants to do far more than I know I...

Been thinking about this a lot. Is there a process for challenging NICE once guidelines are out - are any pain charities / groups / people thinking of doing this? I’m glad there’s a FOI request being put in. But surely there must be a way to challenge this - on many grounds - one being the...

So there’s 3 psychologists / psychiatrists on the committee (including the Chair), and another 2 co-opted psychologists / psychiatrists (including an “addiction specialist psychiatrist”!) , a few consultants working in NHS pain clinics including one for “pain transformation”, a couple of GPs, a...

@InitialConditions I’m not sure if I understand fully. Are you saying that the NICE guidelines have been pushed back partly because they needed to address the BPS people’s claims about GRADE not being used properly when assessing evidence? So they are re-assessing all the evidence? Or they’re...

So it turns out the lamp that I recently got which I wrote about above, isn’t actually good. I thought it was dim; it turns out it was only dim because the power was running out and it wasn’t connected to the mains. Once the battery got recharged again, it was too bright for me. so I’m back to...