Search results

These are two other major SH CFS interviews for context https://www.researchgate.net/publication/51523965_Chronic_fatigue_syndrome_Understanding_a_complex_illness https://mrc.ukri.org/news/blog/encouraging-new-ideas-for-cfsme-research/?redirected-from-wordpress

woo let’s erase the fact he was the appointed chair of the mrc ME expert group since 2007. The CMRC was anything but starting afresh. silly patients eh, one step Removed from Simon WesselyS patients are fixated on a virus. Actually patients recognise both the complexity and the diversity’s, we...

I would imagine so.

One thing AFME Sam said on Facebook was they were open to suggestions of clinicians to get involved. The problem is , with newton presumably not allowed as a researcher, who are the good CFS clinicians?

they want the engagement, with it, we aren’t keeping them on their toes necessarily but dancing to their tune, validating their projects and CFS agenda. Patient group engagement was used to validate the PACE trial, where AFME supposedly believed that pacing would get a fair trial and people like...

The communication of the objectives have been poor and when I asked what will be the focus, the reply was that’s up to the steering group AFME have a history of doing things that look like doing things but actually achieve little. Eg the WHO lobby thing. I would have like recognition of and...

I’ve been engaging with AFME on their Facebook post. I’m still full of reservations /questions about the purpose and use , especially in the context of difficult illness. . The closest illnesses to ours are fibromyalgia and LYME who had PSPs, so quoting stats about childhood disability is not...

meres.uk/CellBioenerg http://www.meresearch.org.uk/our-research/completed-studies/cellular-bioenergetic-function/ MERUK write up. They are defining moderate ME as housebound and severe bedridden which I still find problematic as said above. Unfortunately they don’t expand at all on...

I’m unclear if this is basically a highlight notice and how much difference it can make ? Will this encourage the grants we need ? There’s lots of details of various departments interests and there are end dates as well which seems to make it more than a general highlight notice.?

I can’t agree fully . I’m very severe now and had mild 2 years at the start, what you can experience as a mild severe flare, or atleast I did, isnt the same if you’re saying as bad as what the severe can experience. I get really bad vision and speech, sensory loss, loss of hearing even...

I am uneasy by these researchers using the imo “off key” criteria of nice and icc, to redefine how the severities are classified. These have been at odds with the severity scales and how groups like the 25% define themselves. I'm not suggesting there's bad intent , it was probable convenience...

This post has been copied and posts discussing severity levels moved from this thread about a research paper. I am uneasy by these researchers using the imo “off key” criteria of nice and icc, to redefine how the severities are classified. These have been at odds with the severity scales and...

How delicious to be at kings MH unit and get automatic access to streams of funding.

What are your suggestions for how solve /OMF etc can ramp up their fundraising in America ? It is suggested that’s all we need to do, and stop expecting the state but our charities both in the uk and America have shown themselves completely incapable of raising large sums and in the American...

Hopefully me research UK will publish a lay summary. I did t really understand what they were saying about acidification and I think that they Said the severe ME Lowered glycolysis was correlation not necessarily cause. nice to see some decent research coming out of the uk although I assume...

Regarding janets tweet I guess she does mean dedicated it as the sole focus now versus most other researchers also in field like younger, klimas, lipkin who work on lots of other areas not just MECFS, so we have all his time & effort, naturally as his son is so ill. my problem with the...

Wow that’s amazing reach. Shows how wonderful a write @Naomi10 is.

I watched his CMRC presentation but had brain lapses so more gist than details. he is blessed with energy and seemed very enthusiastic about collaborations and various possibilities. I really would like to see him funded. The polish cohort had CPET testing so even better than uk diagnosis I...

Unfortunately I think that we Are just stuck with double standards. So it’s outrageous for a healthy person to be stuck twelve hours at an air port (think of those phrases “well that’s so many minutes /hours of my life I will never get back”) but fine for sick people to have months on long...

I think that deprivarion Is a key word, again under-used in our campaigning. Disability or even fatigue doesn’t usually or automatically convey the deprivation our cognitive and sensory fatigue especially dictates. Life limiting is another good word. in fact a lot of disability campaigning is...