Hello and welcome to March’s newsletter. Hope you have had the best month possible.
12 Smiles were sent to both ME sufferers and carers of all ages this month. All chosen and personalised to fit each person’s likes and interests. Some of the items sent this month included blankets, cushions, socks, gloves, candles, bubble bath, body lotion, hand cream, nature postcards, animal ornament, cross stitch kit, board game, fidget toy, camera lens mug, sketchbook, notebooks, pens, art supplies, books, fairy lights, sweets and chocolates.
This month’s share a story is by Veronica who wanted to share her story after recently receiving a Smile. She shares her experience of ME, lessons she’s learnt with orthostatic intolerance and the implications of GET and CBT. Thank you Veronica for sharing your story. “Thank you so much, Smile for ME and Helen for nominating me. I had been having a very stressful time with domestic problems and it really cheered me up with amazingly suitable wildlife themed gifts.
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.”
Smile of the month
What’s made you smile this month? Each month we ask this question on social media and we love hearing the responses. We hope by sharing some of your smiles it can help others to find a smile too.
To everyone who has supported us this month thank you. It is thanks to your kindness and generosity we are able to continue sending Smiles to people affected by ME so we can’t thank you enough.
A special thank you to Mandy Grayson, Padnell Infant School children and families who raised an incredible £1441.08 with their sponsored bounce. Thank you to all the wonderful bouncers, you were amazing and you have all helped make a difference to us.
A big thank you to Sky and Jude who raised a wonderful £584 as part of their DofE with a Christmas stall and a Safari Supper they held in their village. Thank you for kindly choosing to support us and for all your hard work helping to raise an amazing amount of money.
Last but not least thank you to ME Global Chronicle and Rob. They publish an international newsletter every 3 months with ME news from all over the world and have kindly been including Smile For ME in their updates. You can view the ME Global Chronicle newsletters here. Smile For ME is unfortunately a UK only charity however we are really grateful for the support from different countries and the kindness we’ve been shown.