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She clearly has no idea what severe/moderate means. "Case definition Children aged 5 to 16 years who has been given a clinical diagnosis of CFS/ME with fatigue that is so severe that they are unable to attend school for more than one hour a week during the last 6 weeks of the school term. "...

This is where Prof Chris Burton is based. He is on the Guideline Development C'ttee for NICE. His book on ABC of MUS includes a chapter on Fatigue by Alison Wearden!

I have booked a ticket...

I think Esme is one of the judges on the great British Sewing Bee!

WaLoC model. (What a Load of....) No data in the abstract and no meaningful data in the full paper, no doubt.

Hi Saran, thank you so much for doing this. I am sorry you have been ill for a long time. My daughter, now 24, has been ill for 8 years, and moderately affected. "Fortunately" my daughter was 16, when diagnosed, so we escaped the threats of being referred to social services etc. I am on a...

The name I have noted as new BACME chair is Libuse Ratcliffe. I am not sure where I found this info, nor anything about her...

Something in my brain says George Faulkner.

A year into my daughter's ME her ASO titre (Anti streptolysin O) was tested. It was found to be double the upper limit of the normal range. She was put on 6 weeks of I/M penicllin and improved hugely after about 4 weeks for a few months. She had the cognitive function and stamina to study , sit...

The minutes of the General Meeting on 15.3.18 still have her as Chair. (thanks to @Sly Saint for downloading these). I have seen a name that I did not recognise referred to as the new Chair subsequently. When I find it I'll post it!

GM was at our table for the Scope meeting and said that she was no longer chair. I think that she stopped/resigned whatever after their March conference.

Hi @JaimeS, my husband doesn't often follow my train of thought either! As referenced in Andy's initial post. Extract from the article: "A drug or treatment might be effective because it produces changes in the brain. But it also might work because it drives other types of changes, like at a...

The Centre for Welfare Reform would probably know the answers to these qustions. I am pretty sure that someone from there attended the NICE scoping meeting in May. Nathalie Wright was chatting to him afterwards. @adambeyoncelowe may know his name. Have just had a quick look at their website...

As the reserach is happening at Stanford, maybe OMF or @JaimeS could find out more....

Sorry you've had such a rough day @JemPD

I would love to be able to join a dance class, play squash, go skiing or even walk for 5 mins without pain. However I fear that replacement spines are further away than effective ME treatments!! I'm not complaining re my lot. Following major spinal fusion and then decompression ops when I was...

Who is going to pay for these exercise or other sessions? Cost is a huge barrier for many to participate in such activities. (Serious illness/disability being another reason why people cannot do these things, often compounded by the poverty of living on benefits or other severely reduced income.)

Brilliant once again. I love it.

Yes it is, Jolene Daniels

@Tilly has links with this I think. It seems good based on posts from Parents of ME closed FB group I am on.