Friday 29 September 2017

Schoolgirl’s illness message goes viral | 29 September 2017

 


Pirate FM News, 29 September 2017.

A video by a 10-year-old schoolgirl girl who has been battling an illness for seven years is going viral.

Shannon Tiday, from Plymouth, has M.E. – Myalgic Encephalomyelitis.

Shannon Tiday

It is a chronic condition which sees her suffer from things like vomiting, extreme fatigue and crushing headaches.

But now she is appealing for awareness after a study suggested it could be a psychological issue. And her video has been watched over 12,000 since her mum posted it to Facebook.

It comes after a study on the ‘Lightening Process’ was released – implying that it could be treated psychologically.

The process is based on a three-day training programme, which aims to teach participants techniques for managing the acute stress response that the body experiences under threat.

However, mum Sharon, who is a spokesperson for ME Awareness, says it is simply casting doubt on what is already an ‘invisible illness’. She said:

“ME sufferers have fought for a long, hard time to actually get the awareness across that it is real.

 

“It’s an invisible illness and we all know that’s always going to be a harder fight to get people to see the disability in an invisible illness.”

 

She says it all comes down to the fact that it cannot be picked up in blood tests – and in the past, even doctors have suggested her daughter was making it up, or she was being overprotective.

However, describing the condition in Shannon, she says it is important to ‘go with your gut’.

She said:

“It really did hit crunch time when one day I put her to bed, and suddenly she just sat up and just didn’t stop being sick.

 

“I think that last for three or four months, of just constantly, violently being sick.”

 

Shannon and her mother.

Sharon added that Shannon has had to take time off school because of the condition, and can’t put her body under too much pressure without becoming ill.

‘High tolerance’ conditions can only be done for up to three hours a day, such as eating, bathing and travelling, meaning they have to schedule in plenty of time for rest.

“It’s robbing her of her childhood,” she said.

In the video, Shannon passionately asks the viewer ‘Do you think I don’t want to go to school?’ and goes on to describe times when people told her she was just trying to get attention.

She says:

“It’s not our fault, so don’t think it’s our fault.

 

“Hopefully someday they will have a cure for ME.

 

“The truth is, you’re not alone and I’m doing this video to help you.

 

“Don’t ever give up – if you give up, it is the worst feeling”.

 

The research has also received a poor reception from other areas of the ME community.


Dr Charles Shepherd, medical adviser for the ME Association, said:

“The Lightning Process is not a treatment that we endorse or recommend for people with ME/CFS.

“Patient evidence, gathered from our members over many years, indicates that some people who have gone through the LP try to make rapid and unrealistic improvements in their physical and mental activity levels. However, this is followed by a relapse or significant worsening of symptoms.

“Others who have gone through the LP programme, report that they have spent huge amounts of money with no obvious benefit.

“There has been a very significant growth in biomedical research globally into M.E. in the past decade. This over-simplistic and largely psychological model of ME/CFS causation that is being put forward to patients is totally out of step with emerging scientific evidence as to the cause of ME/CFS.

“We will be looking at the release of the SMILE trial results very closely indeed.”

Read the article and watch Shannon’s video on Cornwall’s Pirate FM news page.

 


ITV News Report:
Child with M.E. wants to tackle the stigma

Shannon and her mum were also featured in an interview by ITV local news yesterday. Some excerpts from this feature appear below:

Shannon has been left practically housebound after developing M.E. – a disease with symptoms of chronic fatigue – meaning her childhood is very different from her peers.

“People say that I’m a wheelchair girl and they say to me, there is the wheelchair girl and that kind of makes me feel different.”

 

Shannon Tiday, M.E. Campaigner

 

“It is an illness that totally invades your life, everything you do as a family, your holidays, everything takes a different path.”

 

Sharon Tiday, Shannon’s Mother

Shannon’s mother also says her daughter has faced accusations that the condition is all in her head.

“I was told maybe she is a bit of an attention seeker, maybe your daughter actually likes being ill. To tell you your child likes being ill, it’s like saying your daughter doesn’t really want her childhood. What child would want to be ill with an illness like this.”

 

Sharon Tiday, Shannon’s Mother

Shannon made her Facebook video after learning about a private treatment called The Lightning Process – which suggests her condition can be improved through psychological treatment.

“It made me go back in time to when I was being told that I was having it all in my head and I could stop it if I tried, because I knew how bad that hurt me.”

 

Shannon Tiday, M.E. Campaigner

Watch the full report from ITV news on their website.

 



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