Discussion in 'General ME/CFS News' started by TiredSam, May 6, 2017.
I saw that. So moving. And great that the BBC picked up the story. I wish the happy couple great joy and better health.
More info on Jessica and the treatment programme she received at Burrswood Hospital in Kent in 2014:
My comment on BBC news.
I wrote this as a severely affected person with a very different life story, not out of jealousy but out of concern that the message isevere ME can be overcome through defiance , determination and physio is not a helpful one if thought to apply generally, indeed such prodding sticks ideas are used to bully the severely affected with regularly.
I also had great reservations with how the burrswokd story was presented.
I have watched most of Jessica's own videos to learn of her story.
It's not the first time Jessica walked I'm afraid. I,m in the severe ME community and know this case quite well. There was daily mail coverage of Jessica starting to walk again at a private specialist hospital 2-3 years ago. From what I've read on other pages, Jessica spent her four years early on in her illness in that hospital unable to rehabilitate as she was unable to move and was tube-fed and mute some if that time . She then started to improve enough to be able to go home - speaking , eating etc. She carried on improving enough to engage in rehabilitation and live a more normal life and has gradually been able to increase her walking, including once again as an inpatient .
The piece itself says she's had intense physio for a year and that was to increase how much she walked so it's an inaccurate headline . You don't just spring up out if bed and walk about after years of serious illness and incapacitation with an illness defined by neurological dysfunction and energy production breakdown.
Also please don't think doing well with severe ME is just about attitude and determination and physio. Many are too ill to work with a physio at all, many make no progrsss even if they do. For many just the effort of working with a physio could make them more sick. Jessica is a fortunate lucky success story, not representative of the severe ME community as a whole.
There has to be recognition of The many factors involved in people with severe ME having improvement such as lucky genes, illness history (Jessica became bedridden within a year I think - quick decline can be associated with better outcomes) , very good care at home and inpatient (rare in severe ME) , young age etc.
This is a very palatable story for the media of severe ME , the happy ending young girl who overcame extreme adversity through fighting spirit is how they fit it in to the two minute coverage. I ofcourse wish Jessica well on her improvement and blossoming life and it is a very happy, newsworthy story but I would like to see recognition of the reality of other forms and struggles of severe and care not to reinforce unhelpful stereotypes about how we can all beat this. ..
Dr Ron Davis (Stanford geneticist and human genome dr ) who's son has been tube fed and catheterised for a few years due to profound severe ME said it is one of the cruelest illnesses he's ever seen. Many are left severely isolated and profoundly disabled and often in that degree of incapacitation for years or decades. If you do not naturally start to improve or cant engage in rehabilitation there is NO treatment and many have distressing levels of pain, insomnia and nausea on top of debilitating physical weakness and crippling cognitive impairment. Severe ME can leave people desperately isolated as just engaging in conversation or having company can be too draining. To date UK government has funded no biomedical research into the severe forms of ME/CFS. Please end the general neglect of severe ME - both in terms of research and medical care - so more can hope to have the happiness that Jessica now enjoys.
Thanks @Cinders66 for more background. I watched the story and noticed that although she managed to walk with support down the aisle and back, she then went straight back into the wheelchair afterwards. In one other shot where she was standing, I noticed someone's hands around her waist, apparently to steady her. I wish we were given the follow up, as in how long it took to recover from the exertion of the event. It's clear she's in no way 'well' and I hope her determination didn't lead to a setback in overall health.
That said I do wish the couple much happiness, it's not going to be easy with her need for ongoing support.
I do hate the narrative that if you set goals and work hard you'll get there in the end, which is a basically a fairytale- not everyone does! I do wonder, when watching Paralympic sport, what harm the athletes might be doing in pushing so hard to overcome whatever disability they have. Are they storing up problems for the future?
I have friends who adopted a baby born without one forearm. Even tho not an athlete, she has done pretty much everything she wanted to. But her mother told me that by the time she was 30, she had developed arthritis in the shoulder of her good arm, as she's overused it her whole life to compensate for the other. (She never liked using a prosthesis.)
Wow, I followed Jessica's story and "World of One Room" on FB but stopped quite a while ago and had no idea she could walk again and was getting married!
I know each case/person is drastically different, but am very happy for her and wish her the best in her new life, and always found her to be an inspiration.
Congratulations to the young couple. I wish them all the best.
Someone in the Facebook comments for this video saying we should be forced to exercise and then we wouldn't get osteoporosis. Then someone later, a physio, steps in to say his comment might not have been phrased properly... this was her making herself out to be the more rational and informed voice... before she went on to talk about mental fortitude (to walk) and how evidence did not show any harm from exercise. She also put her expert hat on (I'm being sarcastic here) and said that seizures (which I've had too), are not associated with ME. Quite the little expert. I was going to type a response, but I didn't trust myself to be polite. This is the rubbish that's going on more than 32 years after falling ill. Most of the comments though seemed sympathetic and supportive.
I do wish people would keep their stupid opinions to themselves. I'm not sure posting this kind of ableist and ignorant rubbish below someone's wedding video (even for a BBC piece) is appropriate.
EDIT: Loads of people are commenting on FB. Generally supportive or curious about the illness. Many also sufferers.
Her husband has posted on the fb page, it seems she has suffered a great deal for her amazing efforts
Samuel Taylor-Bearman Thank you for all your lovely comments. The video you saw above was Jessica after a year of hard work, determination and physio. That same evening Jessica had two seizures and was in incredible amounts of pain. A week has passed now for Jessica and she is still in incredible amounts of pain and payback but in her eyes it was worth it. Jessica is a inspiration to not only me but to many she is a Amazing Human. Please spread her story and let's everyone talking about M.E. #MillionsMissing
The story has had 1.7M views so far! That's just on the fb page, many more will have watched on tv.
I hate to be a party-pooper, but if you hover over the video for more than 3 seconds it counts as a view. Still, though, I am sure the actual view count is a significant portion of that number.
This is the top comment on the Facebook video. I believe it must be from her husband:
I wonder if CBD oil would help with her seizures, heard of it helping a lot for some people in the USA.
Unfortunately I have also come across people with ME who didn't have severe ME who seem to be of the opinion that people with severe ME could do more if they tried harder/with rehabilitation (while not necessarily believing this for themselves).
If people with moderate or mild ME have specific activity ceilings, there is no reason why people with severe ME don't have them either.
I would say it's likely most people with severe ME will try again and again to push themselves.
Congratulations to Jessica and Samuel. Thank you for sharing your story, your struggles and your victories. Sending my very best wishes.
True, but i'm not entirely sure I wasn't an ignorant idiot like that in the past. I took my CBT/GET therapist word as gospel for a considerable time, only to get educated later on by a book written by Michael Maes. I get how infuriating it is now and I get people do get mad and have every right too. But in the long run education would do more good, maybe they won't listen to the first, second or third person to tell them what's what, but in the end I reckon most people do get curious and want to know more.
I think she could only walk down the aisle - just that one walk was all she wanted to do. She cant generally walk again and is still mainly bedbound I believe.
And this of course overlooks the fact the body has a quiescent energy demand - when you are laying there doing absolutely nothing bar staying alive, those basic life support mechanisms still require energy to keep them going. If your "activity ceiling" is at or below this, then you are actually already hitting it ... simply by virtue of not dying! I think it is very easy for some people to think that if you are not visibly exerting energy, then you are not using any.
I fully agree. Everyone in the community accepts ceilings in the mild to moderate , although I understand UKs fatigue clinics and Peter White may not.
However for the severely affected practically everyone just expects them to improve to a reasonable quality of life again or to be able to do rehabilitation- why? Is it because severe ME is so debilitating people think " you can't live like that" or don't want to think that can be long- term? , or because some severe do more easily improve so it's assumed all can, or is it because of the fundamental underlying "it's only ME" ideas that come from the medical profession so it can't be that bad indefinitely that even sufferers can hold.
Ceilings can be concrete ceilings at 5% or 55% functioning unfortunately. The idea that the severe who don't get better aren't continually testing the water or hoping for improvement too is wrong and I also think that once severe it's much more likely that be forced to over exert and cement ceilings. It's like being a fly caught in a web, the more you are caught , the harder to get out and the easier it is to tangle yourself more by the slightest thing.
Or being stuck up to your armpits in quicksand. Without the right help you are stuffed.
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