Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

[Firestormm]

23-year-old takes her first steps in NINE years after being confined to bed with disabling illness... and she's grown four inches

• Jessica Taylor was diagnosed with ME at the age of 14

• The 23-year-old has been confined to her bed for nine years, struck by bouts of exhaustion, muscle and joint pain, poor concentration and headaches

• She has now taken her first three steps towards her independence

• Former netball captain has sat up and built her strength allowing her to get out of bed and finally move about for the first time in almost a decade

• She said: 'Walking was just a dream, but now it's a reality'

Jessica Taylor beams as she stands for the first time in nine years. The 23-year-old was diagnosed with ME at the age of 14, and has been confined to bed ever since

A 23-year-old who was confined to her bed for nine years has taken her first three steps towards independence.

Jessica Taylor, from Rochester in Kent, fell ill at the age of 14, after contracting a deadly virus.

It attacked her immune system, leaving the teenager with Myalgic encephalomyelitis (ME) - a long-term disabling condition.

Sufferers struggle with bouts of fatigue, as well as muscular and joint pain, poor concentration and headaches.

But today the former netball captain is celebrating taking her first few steps, spending nine years building up her strength.

'I had been pushing for this moment for nine years,' she said.

'I have spent almost a decade in bed, there have been times when I couldn't move and have been fed through a tube.

'Walking was just a dream but now it's a reality. As I stood up I realised I had grown by four inches.'

...

Read more: http://www.dailymail.co.uk/health/a...ess-shes-grown-four-inches.html#ixzz3949dg6FN

...

Recently she launched her own website, Share a Star, to help children and young adults battling illness.

Jessica said: 'I set up the charity from my bed to help those in a similiar position to myself.

'I wanted to help others feel special, it also gave me something positive to focus on.'

Living with ME means Jessica's future is uncertain but she said she refuses to let it get her down.

She said: 'It's amazing that I have been able to walk after nine years, hopefully things will just keep getting better from here.'

Tony Britton from the ME Association said: 'This is a lovely story and we wish Jessica Taylor all the best in her recovery.

'But ME affects about 250,000 children and adults in the UK - many of whom can only hope and pray that they too will one day be able to receive the same kind of attention that she received through her stay at this private hospital.

'For vast numbers of severe sufferers, though, the reality is that they languish disbelieved and untreated because the NHS doesn't provide the care and understanding that people with this illness need to overcome its worst effects.

'They remain isolated and cut off from the rest of society because they are often too ill to leave their homes, they become bed bound and - in the worst cases - need to be fed by tube.

'Researchers are beginning get to grips with the causes of M.E., which can affect all bodily systems. The day when there are widely available treatments and perhaps even a cure can't come too soon.'

Read more: http://www.dailymail.co.uk/health/a...ess-shes-grown-four-inches.html#ixzz394A2Ork9

Daily Mail includes lots of photographs and a video made by Jessica.

Same story appears online in Daily Express with added detail: Reproduced here by the ME Association: http://www.meassociation.org.uk/201...struck-down-by-me-daily-express-31-july-2014/

Ms Taylor spent 16 weeks staying at the Burrswood Centre in Kent, which specialises in helping those with ME, where she underwent physiotherapy and hydrotherapy.

Great to see some major reporting. Of course we heard of Jessica's success earlier (last month I think?).

For anyone who hasn't been following Jessica's struggles (Facebook: World of One Room) it has been a very long and hard fight and it isn't over by any means.

Jessica is also to be featured in the upcoming Canary in a Coal Mine documentary by Jen Brea and her team.

 

[Ambrosia_angel]

I just came across this on the daily mail. It's made my week. We need more stories like this! So inspiring.

 

[Firestormm]

I just came across this on the daily mail. It's made my week. We need more stories like this! So inspiring.

I totally agree

 

[A.B.]

That is great to hear. Is there some information about the virus, and treatments that she did?

 

[Firestormm]

That is great to hear. Is there some information about the virus, any treatments that she has tried?

No. And I wasn't sure about 'deadly virus' either. Can't recall what she had picked up that started all of this but 'deadly virus'??? Could be I suppose but nothing I have seen made me take note and I think I would have done. I have been following Jess for quite some time.

A remarkable young lady indeed. And a great credit to our community - not because she has been finally able to walk - she was before and remains so in my opinion. A terrific advocate

 

[TigerLilea]

I'd like to know what the treatment was that she received. My alarm bells go off when I read stories like these because this is so NOT the CFS/ME that I have. Why would any parent let a young child languish in bed for so many years? And why is it that these types of stories tend to always come out of the UK???

 

[Gingergrrl]

That is great to hear. Is there some information about the virus, and treatments that she did?

This was my question, too, and if anyone knows which viruses she had or what treatments she did, I would love the info.

 

[Cheesus]

I'd like to know what the treatment was that she received. My alarm bells go off when I read stories like these because this is so NOT the CFS/ME that I have. Why would any parent let a young child languish in bed for so many years? And why is it that these types of stories tend to always come out of the UK???

I often read about other people's experience with ME and just think 'that is not what I have'. In all honesty, it probably isn't. We'll no doubt find out more in the next few years.

For the time being though I am really pleased to hear she is improving Absolutely fantastic news. I hope she goes from strenght to strength.

 

[Cheesus]

A remarkable young lady indeed. And a great credit to our community - not because she has been finally able to walk - she was before and remains so in my opinion. A terrific advocate

Very well said.

 

[Daffodil]

why do you think this is not the same CFS that you have? it affects everyone differently

 

[Cheesus]

why do you think this is not the same CFS that you have? it affects everyone differently

It could be. I just think the heterogeneity of symptom presentation with CFS/ME means that there is likely a number of subcategories of the illness. I feel I have a lot more in common with some people's experiences than others.

You might be entirely right, though. We could have the exact same thing going on, but for whatever reason it manifests in different ways. I am sure we will find out soon.

ETA: And in the meantime, I am really pleased we have people like Jess who are championing our collective cause!!

 

[barbc56]

@Daffodil

I have the same question.

Keep in mind phsiotherapy is not GET.

 

[MeSci]

I'd like to know what the treatment was that she received. My alarm bells go off when I read stories like these because this is so NOT the CFS/ME that I have. Why would any parent let a young child languish in bed for so many years? And why is it that these types of stories tend to always come out of the UK???

What alternatives are there? Forcing her to get up and exercise?

I too would like to know if she had any specific treatment. Or could it just be that the bedrest allowed her body to recover?

 

[Min]

Her inspiring story is here too, I undetstand she is home and hope she continues to improve.

http://www.express.co.uk/news/uk/494068/ME-woman-walk-for-first-time-in-nine-years

It is not her parents who left her 'languishing' in bed for 9 years, but the UK's health service that offers bedbound sufferers absolutely nothing, and would have been content to leave her there for decades, because White etc insist that myalgic encephalomyelitis is a somatoform disorder. It is shameful, given the amount taxpayers pay into the national health service, that the only help she could get was paying privately.

 

[Firestormm]

I'd like to know what the treatment was that she received. My alarm bells go off when I read stories like these because this is so NOT the CFS/ME that I have. Why would any parent let a young child languish in bed for so many years? And why is it that these types of stories tend to always come out of the UK???

I think it's a fair point and does seem to be the exception rather than the rule. I spent many months in bed when acutely ill - back and forth to hospital at times - but was never in the same situation as Jess. Never that bad. I could always manage to shuffle to the toilet on my own steam.

And it wasn't her parents keeping her there. She has I believe been in touch with health professionals every step of the way. There is nothing to suggest otherwise. I have been following her Facebook page and Charity progress for ages.

The extracts above describe where she was when she started to walk:

Ms Taylor spent 16 weeks staying at the Burrswood Centre in Kent, which specialises in helping those with ME, where she underwent physiotherapy and hydrotherapy.

But Jess had stayed there several times (if not many times) before I believe. It has been a very long journey for her. Until we try and better understand the extent to which very severe patients are disabled, and the prevalence of such numbers: we don't really know very much about this end of the spectrum.

 

[Cheesus]

Her inspiring story is here too, I undetstand she is home and hope she continues to improve.

http://www.express.co.uk/news/uk/494068/ME-woman-walk-for-first-time-in-nine-years

It is not her parents who left her 'languishing' in bed for 9 years, but the UK's health service that offers bedbound sufferers absolutely nothing, and would have been content to leave her there for decades, because White etc insist that myalgic encephalomyelitis is a somatoform disorder. It is shameful, given the amount taxpayers pay into the national health service, that the only help she could get was paying privately.

I actually find my NHS physio to be very helpful. I speak to her on the phone once a month and we talk in detail about my activity management and how I can reconcile pacing with managing to gently push at my physical boundaries. I don't feel I would have seen the improvement that I have without her help. We balanced my boom and bust and we've sorted out my sleep. Just having someone to regularly touch bases with and get feedback from who has seen a wide diversity of patients has been very valuable.

I'm not sure what services there are in other parts of the UK, though.

 

[Gingergrrl]

@Firestormm Would a patient like Jessica who was in a special hospital for ME ever receive testing for things such as EBV & herpes viruses, Lyme disease, etc, or would this never occur in the UK? I understand the NHS will not do it but can someone choose to pay privately for those tests if they are able or are they forbidden?

 

[Daffodil]

what we have is autoimmune. no amount of antivirals or antibiotics or anything we pump into our system is going to make us recover until they address the autoimmune nature. our immune system will remain weak and we will just keep getting infections.

 

[Sasha]

what we have is autoimmune. no amount of antivirals or antibiotics or anything we pump into our system is going to make us recover until they address the autoimmune nature. our immune system will remain weak and we will just keep getting infections.

I don't think we know that. I'd agree it looks on the cards for at least some of us, but others may have an active infection.

 

[Mij]

I don't think ME is any different than other debilitating illnesses. There are different severities, some with MS can go into remission while others are in a wheel chair. I'm thinking genetics plays a bigger role?

It is interesting though that most of these news stories come out of the UK.