Search results

This in a nutshell, to link to another thread debate, sums up how CFS has been treated , which is not that it has a serious biological basis. It’s all the patients fault - they’re not sick or seriously mentally ill, just thinking wrongly, with a depressed mood and a “satisfying life” can be...

I thought this same journalist had covered this story a while back. If the Lancet are just going to sit on their hands as long as they can and completely get away with it I think it shows why we need a group like #MEAction who might come up with innovative ways to get this boil lanced. As...

Generally it’s a very good article, helps to raise awareness. “● The effects of M.E. are devastating enough to leave 25% of patients housebound or bedbound. For moderate to severe patients, living with M.E. is like living with late-stage cancer, advanced-stage AIDS, or congestive heart failure...

I guess trudie is informing the youngsters that they can recover in 6-12 months if they follow her treatment. Any “deviation “ from this is assessed in terms of belief behaviour etc.

I was really moved to see Jamieson struggling to communicate and think he’s to be applauded for showing himself clearly weakened and impacted. The contrast with his former fitness self I think clearly showed strongly the impact of ME. On its own I don’t think his section was too poorly done...

This is what irritates me on ME research, we shouldn’t be spending years discussing hypotheticals, we can either use the tools out there to assess things or not. I saw the lancet are hosting a conference on effects of inflammation and immunity on the brain & mind conditions. Ofcourse ME isn’t...

I think the type of neuroinfllammation being thought to be there in depression,schizophrenia and ME brains shows up on PET scans. Doing PET scans to assess microglial activation was suggested as an avenue for ME CFS by the MRC right back around 2003, it just hasn’t been done much. I think it’s...

I remember Prof Komaroff saying that there could be low grade or mild “ encephalitis” going on. Perhaps he comes from a specialism where this isn’t his expertise but it’s not just patients saying it. I’m not wedded to the name. What I found troublesome in the netflix clip around this, was...

I think there was confusion this year when some groups , even here , published that there’d been a research publication by the Japanese 2018 which was assumed to be the long awaited replication study but it wasn’t I don’t think.

Lack of funding forces charity to cut services for young people with debilitating disease - Chronicle Live[https://www.chroniclelive.co.uk/news/north-east-news/lack-funding-forces-charity-cut-15020025] “ME is a chronic disease that affects multiple body systems, including the nervous system...

Sasha has replied succinctly, here’s my waffle ME wasn’t treated as biologically physical or biologically driven psychiatric in the way you describe @Jonathan Edwards or in the way anorexia or schizophrenia might be now thought . The biological aspect of the BPS model was either ignored or...

The neurologist I saw said my brain might be affected but that didn’t make him classify it as neurological (he wanted psychiatrists to take it on though :( some years ago now). If 80+% of UK neurologists won’t accept its neurological is that because they are unaware of the brain symptoms and...

I agree I get the same benefit from zopiclone ambien and benzos, though sadly I haven’t had the option to try clonazapam, GABA drugs, . Ativan Whitney uses is lorazepam, a benzodiazepine. Quite a few very severe people do report it and I think it’s important. I don’t know if it has the effect...

We never get beyond just saying what’s wrong and should be there to how we can actually get there . Regarding no inpatient places, what can be done? we have been calling severe ME care poor and patchy for years , 2004 MEA were saying that in the purple book. We say we need physician led...

It’s quite unusual for a local support group to have several, top medical advisors? Why are they required?

Hi Has anyone had homocysteine levels tested & subsequently treated and found any benefit? I was looking at this test for ease of use in the U.K. where we have to sort everything ourselves. https://www.yorktest.com/products/homocysteine-test/ I’m not expecting massive help from it but if no...

I’ve just brought the cooling towels mentioned above, in bamboo as it’s eco friendlier. Does anyone have rave reviews for the expensive dyson fans? I have an £80 Honeywell tower fan that’s reasonable but not so powerful. Outlaying £3-400 on dyson is only something I could do if it was much better.

I do have very severe ME and a surprising number of us do engage in some way, on Twitter, forums, blogs, even though we might do little else. Being on here doesn’t mean I’m not very severe. It’s aLso inaccurate to say 25% suffer the mOST severe forms. The 25% covers those who might be able to...

Military health, veterans too. He’s also currently doing a big mental health review for the government. I can’t think of any great achievement, breakthrough in understanding though, but perhaps psychiatrists aren’t expected too. He’s just pushed himself forward and ingratiated himself with...

I get shades of PEM, if you’re at I want to die levels I’d call it a crash. Milder PEM for me might be immune activation, insomnia, lasting a day or two with reduced function, a crash is worse. But I’m bedridden so very little exertion sets off some symptoms which I’d call PEM , without it...