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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...

I actually don’t know if I agree. I think it’s BECAUSE we aren’t making proper progress on the issues, that patients become concerned with trying to modify anything they think might get us more the respect and recognition and action we haven’t got.

I think there’s a truth in that but regarding CFS terminology I think it’s actually preventing proper respect and recognition necessary to solve the issue, so it’s not just semantics.

Totally agree Trish. Of course very useful for Crawley et al and really just a weakening to more like oxford criteria in uk to perpetuate the bps approach. Turning PEM into fatigue takes out the sickness, illness, pain aspect so central to PEM, conveniently. Saying that I do think there are...

I know some people find the term PEM belittling to the severe distress most of us actually suffer with an exacerbation. But words are tricky. The word distress I’ve just used can be misinterpreted, the alternative some prefer PENE , is less satisfactory to me because it’s about exhaustion, the...

A crash for me is a really bad flare of ME where I really go down hard as opposed to more mild PEM where I can feel worse, flukey, do less for a day or two. A crash would be a more dive down in function and a “I’m out if order” state. A relapse for me is more severe than a crash, as in its...

It hasn’t progressed as I would like. The DoH seems to think SHs strategic priorities are the way, that’s it. The strategic priorities have seemingly progressed little from when they were suggested last year. Eg Holgate wanting a uk version of IOM report hadn’t got anywhere, with CS proposing a...

Of Forward ME members, MERUK left CMRC and the 25% I don’t think would join, so idk if CoM is representing all of them.

https://www.actionforme.org.uk/uploads/images/2018/07/DRAFT_Minutes_CMRC_10.7.18.pdf I’ve not seen these or this news anywhere before so posting here. I can’t see much else in significant developments. Another BACME member is involved. Dr Louis nacul was there as an observer. Mainly a...

I don’t see why a slightly more complex criteria is unacceptable, perhaps it’s part of the issue of expecting primary care to diagnose. MS & lupus & sjogrens are quite complicated illnesses to diagnose requiring tests , as well as history etc AFAIK. I’d have thought any potentially chronic...

He’s also an Alzheimer’s champion and prostate cancer “victim “so probably has enough health “causes”