Share a story – Veronica
I would like to share how I came to be severe, unable to sit up in a wheelchair since 1997, as it might help someone else from suffering my fate.
Many (most?) of us have Orthostatic intolerance, ie symptoms made much worse by standing/sitting upright, and I found to my cost, standing still is far worse than moving about same length of time. Many of us shift feet and put feet up unconsciously.
I came home from the teaching job I loved end June 1996, aged 57, feeling a bit fluey. i pushed too soon to pack and go on holiday to recover in the sun, but didnt recover. It is so important to rest while you are unwell with a virus.
My gps knew me well and one diagnosed ME in ’97 and because of my age I got ill health retirement.
The advice then was graded exercise, devised by the Wessely school of psychiatrists, but I found that was harmful, and paced myself, keeping diary.
However it wasn’t widely known then that many with ME have orthostatic intolerance, (OT) ie symptoms made worse after being upright, sitting, standing or walking, so I kept crashing to a lower level of functioning.
I didnt realise standing still caused much worse Post Exertional Malaise (PEM) or exacerbation of symptoms (PESE) than moving about.
Many of us unconsciously shift from foot to foot or sit with feet up.
1 hour at shops = ok next day.
1 hour at shops during which stood still, chatted = crash next day.
Writing in diary ‘1 hour at shops’ didnt include the chat.
I borrowed a wheelchair and was able to go out for up to 3 hours for a few wonderful months, but one day we arranged to meet a friend at a shop, not by the car where I could lie in the back, to give her a lift home, but she arrived half an hour late. That tipped me over the time, caused a bad crash, and ever since I have been unable to use a wheelchair. Such a short time with decades long consequences.
Ever since I can move about for up to a very few minutes at most then must lie down on bed to recharge for up to two hours depending. I am lucky not to get bad pain.
In the late nineties I embarked on ME activism to warn others, change the harmful advice, get biomedical funding, and have done ever since, with letters, emails, tweets to powers that be, leaflets etc.
But we witnessed in dismay the increasing power of the Wessely school of psychiatrists, the endorsed recommendation of GET/CBT in 2007 in the NiCE MEcfs guidelines, £5m going to them for the PACE trial to ‘prove’ it worked.
But this was shown to be erroneous in 2015, and after long consultation the NICE ME guideline was updated in Oct ’21 stressing the danger of pushing self beyond energy envelope, discarding GET and allowing CBT only to help cope, not to persuade you that you are just deconditioned.
However delays have meant that even now the implementation plan has not yet been rolled out so harms continue as all in heath system need education plus the general public.
ME worldwide has been underfunded, the lions share going to the psychiatrists pockets, despite our quality of life being so low.
So am still trying to alert newbies to ME and indeed some LongCovid now of the history of ME, the risks of pushing self, and of OT.
Please do the same and give or ask others to give what they can to ME biomedical research eg ME Research UK, DecodeME etc.