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SNAP! Like chewing from opposite ends of a string of spaghetti we find we meet in the middle! There's been a few posts on the forum over the last week where the writers have demonstrated the same symptom I have, not in the topic but in the physical act of typing the words. I think one of...

I'm so sorry to read the experiences that your wife and you were put through @tuppence. How lucky you were to have each other as a team. I agree with everything you say.

We do! They're continually being treated as if they have an eating disorder which is a mental health illness. They may have already sought out legal advice. Just in case they haven't, they need to get legal advice. Here are some tips: Cost is the first issue, but Legal Aid is available...

Not sure, but this may be what’s going on with a toolkit by Bristol which of course will also be used in Bath. Before reading the rest of this, (2,059 words! which I’ve condensed as much as possible but does not include everything); please bear in mind at all times that NICE Guidelines are...

isn't he just @Trish

Thank you. A massive hug to the lady and her husband, and huge wave to team at DecodeME :heart: and great big :thumbup: to Channel 4. "you can never underestimate.... it didn't just steal from me, it stole from him too and you have no idea how guilty I feel about that sometimes." Currently...

Internet treatment/re-treatment?

I haven't been able to follow all of this discussion, but it seems to me from the recent comments that there may be another issue arising, so I'll just leave this here. What is valid consent? | ICO

Thank you for posting.

Is there a pattern developing here? These are notes I compiled in 2022 [long read] The first UK study to even properly look at outcomes was begun in 2007. It included data from 5 CFS/ME clinics in England covering the period from 2006 – 2010 and was categorized as service evaluation. [1]...

Sorry, forgot to copy over the explanation of neuronal kindling with link. "The theory put forward for neuronal kindling is contained in a paper titled “An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” published on 1 March 2011 (one month after the PACE trial...

Below is an unedited extract of a chapter in a document I'm preparing. "Denial of Medical Treatment and Investigation “Don’t call an ambulance for CFS again”! ..... we as a patient group are regularly denied the ordinary medical investigations into new onset symptoms available to others –...

The Report of the Cumberlege Review titled 'First Do Harm'. 8th July 2020 (delayed due to Pandemic) Independent Medicines and Medical Devices Safety Review report - GOV.UK (www.gov.uk) It was initiated in February 2018. Its primary focus was to examine how the health system responds when...

That's true Andy. But it's what, where, and when it has been said, that I was waiting for, (more so, than the FND aspect), although the fact that it was repeated at an FND Masterclass is a bonus - wider historical context and current day timing. The FND masterclass is annual event, usually...

Perfect, Oh bravo for spotting this on X @Amw66 ! :thumbup: This is exactly what I've been waiting for; I knew it would come eventually. Thank you so much to Claire Jones for safeguarding vulnerable disabled patients. :hug: I've been following the lead suggested by Valorie Eliot Smith's on...

Myself and many others @MEMarge - I was in the adult service she oversaw at Bath. I didn't warm to her on my one and only meeting with her, couldn't put my finger on why at the time. Dropped like a stone 48hrs after their 6 week course of APT and their mindfulness version of CBT, the year...

Question: Does anyone know if NICE issued a statement concerning the possibility of harm resulting from treatment of ME between this specific date parameter? 24.1.2019 - 2.10.2019 The end date being the date Cochrane published the amended version of the Review. Publication of Cochrane...

That's very interesting. Thinking about the possible hereditary implications found in ME: my father had ankylosing spondylitis, and I've had psoriasis for the last 50 years, 32 years before developing ME. Whereas my mother didn't develop psoriasis until she was 55, shortly before her death.

It's certainly her style, she talks to adults like that as well, I know I've been on the receiving end of it.

This is yet more evidence of systemic abuse and neglect. Knowing the source of the initial infection clearly makes no difference! "Some participants attributed this dismissal to health professionals’ inability to explain, manage or treat their debilitating symptoms, and so relegating them to...