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You’re right on baseline bit but I don’t think the rest of that paragraph is too bad, it dies reflect very low levels of toleration. There is diversity of paths with some able to eek themselves up, some just feeling better and others stuck. AFME aren’t alone in this type of rhetoric, it’s there...

you can just do it again and say yes, I did when I was snooping. I know this is more about the get offered to all mild-moderate but I think GAT applied the way you say is just GET lite. I think that i Saw Dr Charles Shepherd advise someone similar to do the questionnaire

I’ve not heard of graded activity management. I’ve heard of AM which is basically pacing and Graded activity therapy which is aiming for increased activity and is offered to those incapable of aerobic exercise but in the same spirit. Whilst some manage it , usually if they’re feeling better or...

I can’t do the survey as I haven’t done CBT/GET in A “recent “ time frame. I pretended to do a bit . I see they use the NICE 3 severity gradings which list severe ME as being unable to do hardly anything or maybe a face wash and teeth. I have always found that an inadequate description of...

2007 was date of last guideline release. I’m guessing this allows for responses to be on the approved medically directed forms of “treatment “ put out by nice, rather than the less centrally directed “care” prior to this.

It seems reasonable as a concept. My main issue might be there was another established “walk for ME” that fundraises for IIME AND meruk I think.

I do accept pain can be ascribed to psychogenic cause , unfortunately that seems to be the medical default. But pain from recognised illness is more respected, there’s been research and multiple drug options available. Even in recognised Illness like MS and cancer it seems fatigue has been...

Was there a report from #MEAction on that meeting? We always think if we could meet these people and make the argument things would change. I can’t imagine what I’d do in a meeting if I was just met with smiles but apathy, weak promises and not much beyond same old.

That’s such a Wesselyian quote. No doubt like former colonialists he thought to claim and conquer that territory. He would say the natives too savage. So wessely was quoting the psychiatrist who reduced us to hysterics? What a shame fatigue wasn’t viewed as a physical symptom like pain.

Yes pretty much total crap. You can see the circles she mist exist in to be so out of touch with the biomedical approach to the illness and patients themselves. She claims ME and PVS are inaccurate yet immediately just reduces her CFS to CF, a wildly inaccurate framing and presentation of ME...

I think a point VES is trying to make might be that it’s not science alone that can change the reputation of the community so whilst what you say is true it’s also true that important recent figures who’ve helped us David Tuller and Jen brea don’t come from that trained background but have other...

“ Edited version comment Sticking my head up in a risky way, I think Valerie does have a point regarding advocacy which is difficult to articulate well but it does resonate, although I’m not sure if it’s equally age /length of service that’s taken the toll rather than gender. It’s true...

Interesting the severe care has more votes than referring on. I feared it would come further down with a top 3choice system. A survey on the value of existing referral services would be interesting, if it hasn’t been done

I’m foggy today and struggled to see the points made, although I’m sure they were. She said PR isn’t enough but the narrative itself has to change? . Is the narrative intrinsically related to name and criteria? in the UK if the name remains CFS, defined with an open to interpretation NICE...

Wasn’t that reserved more for women ? It’s also odd the article doesn’t mention the ME and IBS possibilities, perhaps because they don’t recognise them as genuine illness or perhaps because they won’t consider that a great, esteemed medical scientist had them.

“While hypochondria undoubtedly played a part in Darwin’s misery“ How on earth can they know that ! Just think if he’d been around today he might have been put on exercise and CBT, I see that chronic Lyme isn’t even recognised, what are all those people with persistent symptoms post Lyme...

I have had one sided symptoms, on the left side I started to loose feeling etc I could see the limb but hardly feel it, for me it was ME and it can cause many bizarre neurological symptoms like twitching, limb contortion, loss of sensation, coldness of one side etc but always good to get new...

I haven’t listened yet but there’s a big difference between being normal and therefore wanting normal sensory stimulation and being so ill you have to withdraw from it and hate it. Light deprivation to a normal person has I think been used as a form of torture, I shun daylight, blue light and...

One point though, despite to us the progress painfully inadequate, in the last five years were miracles that were probably not envisaged by patients let alone those with vested interests in CFS remaining “unexplained”because unexplored. The rituximab research nearly didn’t happen and some...

Yes collaborating mainly with the establishment The international advocacy that they seemed to begin might be good but it’s at odds with their uk action