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That's really creepy! Do you suppose they feel justified in their actions as they believe they are victims of persecution? It's become tribal, but many of the principal actors of BPS affiliation display an arrogant sense of entitlement and lack of capacity for self-reflection, or any self...

https://www.theguardian.com/society/2019/feb/20/in-pain-all-the-time-will-there-ever-be-relief-for-women-with-chronic-life-changing-utis

I too worry about the sincerity of Prof Sharpe’s motives here. If I were a cynic I might say he was merely seeking to distract critics with bluster and misdirection, while hoping to sail the good ship PACE into the fog.

Thanks for pointing this out. I really appreciate this PACE participant sharing their experience, it would be great to hear from more in the patient community who volunteered for PACE. This participant has explained that at the time of enrolement they were relatively treatment naive and their...

Thanks for asking. I’ve now edited my post for clarity. Everything I mentioned is taken by mouth in the usual way. I’ve not tried applying the MegaNaturals BP grape seed extract directly into my sinuses and suspect I’d get a head ache if I did... as I had a mild head ache for the first few...

I think they don’t really mind which of the two ‘treatments’ is used, as, in many ways, (when it comes to ME/CFS) they view them as one and the same. What matters to them is that the patient is undertaking one or the other forms of active rehabilitation. There is a two way relationship between...

If you try Maca, make sure to cook it first (I put it in porridge). Otherwise, if taken raw at sufficient dosage it will cause gut pains. Even when cooked it caused me gut problems and I had to stop. However, it certainly was energising while it lasted, don’t take in evening or you won’t be...

Thanks, I'm going to try that nasal spray. I just recently tried a product called Restore sinus spray, containing 'humic substances'... an interesting one. Slight headache on first use, but then did seem to have some cleansing action and temporarily relieve symptoms for a few days. Not sure...

I have similar sinus/ nasal congestion issues, with clear CT scan. First of all, avoid taking Fluoroquinolone antibiotics like Ciprofloxacin, Levofloxacin etc., these can cause very serious and disabling long term side effects in a percentage of people. There is some opinion that frequent...

Hmm, it appears the HRA are collaborating with a Dr Goldacre on various projects (Ben, presumably). Ben Goldacre is known as an arbiter of bad science yet has steadfastly refused to criticise the PACE trial. I don't think he likes people with ME. Coincidentally, his early career prospered...

Not read full thread, so forgive if repetition, but... now we know the reason for the eerie silence from the BPS brigade after their mauling in the House of Commons ME/CFS debate: they already knew the outcome of the HRA review, weeks before it was even published. Nothing sinister about that...

Haha! So sceptical guys! ;) Ok, so there're some potential downsides to signing up to this... but, overall, I think it's a good initiative; this sort of big data project is something the NHS is well positioned for. I'm in favour of it, but proceed with caution. I got tested at 23andMe a...

Steve Brine, MP states "There have not been good enough research proposals brought forward" [for the MRC to fund into ME]. Ok, on the one hand, there may be an element of truth in that and we need to understand why. But, responding to his statement, I would ask in whose opinion? Who is...

I'd recommend joining the Benefits and Work website, and using their guides to fill in your benefits application form. I think it's the 'ESA50' form you'll need to complete if you're unable to work due to ill health or disability, regardless of what payment scheme operates in your area. You...

https://www.theguardian.com/science/2019/jan/06/charles-darwins-ailments-are-typical-of-lyme-disease-from-uk?CMP=Share_iOSApp_Other

http://www.bbc.co.uk/programmes/w3cswjlb BBC Radio, World Service, Health Check: ‘What’s behind a spike of AFM cases in US?’

Yes, I’ve been caught out by this phenomenon many times. It’s definitely a thing. I’ll have a day or day and a half of feeling oddly well, start up some long neglected projects, get in touch with friends, chatty and brain working, make arrangements to do stuff and meet up... then, wham! I’m...

merged thread https://www.theguardian.com/society/2018/dec/13/afm-children-paralysis-illness?CMP=Share_iOSApp_Other

https://www.theguardian.com/news/2018/dec/11/mysterious-allergy-to-meat-alpha-gal-lone-star-tick

https://www.dontsendmeacard.com/charity-account.html Is anyone here connected with any ME/CFS charities? This seems like a very good money raising and energy saving idea, ready to take off. @Action for M.E. @Russell Fleming