Search results

Thanks kindly for your continued work on this vital aspect of advocacy, likewise to Suzy. I did miss reading her informative posts on her 'taking an absence of leave' from the 'other place.' Likewise, last I checked on the dxrevisionwatch.com site a few days back, I noted there had been no...

Could someone who uses Twitter let Hillary Johnson know that Merryn died on the 23rd April last year, i.e. 2017? A factual correction would not detract from sentiments expressed, and which I share. Wishing everyone improved health and every happiness. John :) ETA to clarify meaning in last...

Ditto, and hope you continue to maintain your improvement over the coming months and years. :) As included in the initial post here for patient feedback @Tal refers to - under headings "Our carer and patient stories and what makes us proud", and here for link to Leeds CFS/ME service page. It...

Donated ... thanks kindly for your continued efforts on our behalf. John :) ps, The 'State / Province / Region' for the UK seriously need updating on the donate page; no Yorkshire to be found .. "Gods own country tha knows." ;)

Many thanks to all contributors for this .. I will forward copies to my local councillor, my local MP, as well as my local CCG and GP practice; that, and include in further evidence for my PIP claim. Can't force them to read it of course, but will make sure to record that this info as been...

You just need to skim the "Study Procedures" section to demonstrate the points made above, and the "PI delivered these discussion points in a way that fostered emotional support, hope and trust." and "we comfortably acknowledge disbelief is understandable and encouraged them to 'see what...

10mph Luther .. if only! 4mph for me, as was only model type I could afford. My musical tastes are far too eclectic to fit in with any mods and rockers theme. Now if you remember some passing comments I'd made in a post on the 'other place', I only have to raise an eyebrow, to incur my wrath on...

"For office use only" mine was "Musculoskeletal disease (general) | Chronic pain syndromes | Chronic fatigue syndrome (CFS)" Did have a 'chuckle moment' on reading that, using my mobility scooter, I try to "get out the flat 4-5 times per week. This is for the sense of mortality." :rofl:

Other than the dismissal of the COI issue raised, this aspect of the ruling is what I find most troubling, and find "chilling". Essentially, representatives of a patient representative body would be allowed to express views privately, views which may significantly be removed from those they...

Why would this not also apply to the patient representative body? ...

Wouldn't that same representative of the patient representative body, acknowledge at the time, that they would need to consult with colleagues to confirm views expressed were indeed representative of their colleagues/members/the wider needs of PwME? If not, would it not be more likely, that they...

@Wonko Thank you for your kind offer, but there is no need to put yourself out any further on my behalf .. your health is the priority. As I say, I'll try and create another thread at a more appropriate time, likely after I've received my DWP decision, which should be due within the next...

@Wonko .. thanks kindly for your speedy reply. More's the pity that you are unable to progress this further, and fully understand your reasons for not being able to do so. It comes to something when they cannot even recognise your ME and ASD, in arriving at their supposedly 'considered...

Hi @Wonko This, and as all too often happens, to the cost of their health for far too many other seriously ill folks. Yours is yet another example of how moving the goalposts, on a regular basis is used to suit the ideological needs of our Government in their quest to deny disability; moving...

Thanks kindly for the bump @Sly Saint . You've saved me a job I was going to do later. On a brief read, seems that SMCI are ahead of the curve on this one, and seems to be the kind of approach many of us have been asking for? I'll look forward to reading comments from folks more qualified than...

DWP policy-based evidence making, enabled by BPS cult who also view themselves as moral guardians of social values; values defined by themselves as to what is good and what is bad, what is useful and what is not, etc? I'm still at a loss, as to how subjective reports of feeling better or much...

Following on from my 'digging' yesterday, with respects to the above mentioned MRC funded PEM study .. run out of steam last night, so did not post further. Having entered the search term "Imaging the Neural Correlates of Post-Exertional Malaise in CFS/ME" in Google, taken from the transcript...

I've been doing some more digging on this issue .. The following info has been extracted from the latest MRC "Grants and fellowships awarded (CSV, 29.22MB)". Please note that this appears to be the only MRC grant awarded to Professor Mark Edwards, and more information is available within the...

So is Prof Stephen Holgate suggesting that they will first need to 'reinvent' the wheel, and create another so called "high-level" report, and if so, how long would that take, and how would that tie in with his insistence that "we need to see results now, .."? Likewise, is this not something...

Conclusions This model does not accurately represent the experience of individuals with CFS, particularly those who fulfill more stringent case definitions. Fixed! ;) How 'tired I feel' does not stop me from wanting to and/or undertake activities. An abnormal rate of fatigability induced by...