Mirror: Woman, 28, goes from keen runner to year in dark room because of severe disorder

[TiredSam]

I thought this was a good article up to:

“Nothing has been done yet. There is a NICE review, however this wont be done until October 2020. That’s just far too late and thousands will suffer because of this.”

I wish that had been the last sentence. But then woo and fundraising, as ever.

 

[Little Bluestem]

Some purely aesthetic applications include the reduction of facial wrinkles, hair regrowth to treat baldness and fat layer reduction.

@Graham will want to know about this!

Michael R Hamblin Ph.D. is a Principal Investigator at the Wellman Center for Photomedicine, Massachusetts General Hospital

Isn't this the same hospital that imprisoned that poor girl a few years ago.

 

[Graham]

@Graham will want to know about this!

Thanks Bluestem! My cranial desert probably does lack stimulation.

Discussing light in general, I'm an owl and always have been. I go to bed late and prefer to get up late. You can bomb me with blue light in the mornings and I'll still prefer to sleep. I'm also a keen gardener, and like to be outside more or less regardless of the weather. So much for light promoting hair growth.

I know there's a lot of theory about blue light and sleep cycles, but I can't say it seems to have much effect on me, but then, I never was a light sleeper.

This all reminds me of the craze in Victorian days, when electricity came to the fore, of applying electric currents to various parts of the body to heal almost anything, or even bringing the dead back to life (Frankenstein).

 

[DigitalDrifter]

There are more details on the gofundme page.

My sister had ME for years until my parents found a 3 day course called The Lightning Process which did actually cure her. From what you’ve written Natalie’s condition seems more severe (like my sister’s was for the first 4 months). I hope you find something that works for her x

I wonder if that's a genuinely mislead user or a Lightning Process shill.

 

[ladycatlover]

Merged thread
For the past year, 28-year-old Natalie Price has been living in darkness and silence.

In 2014, she was diagnosed with myalgic encephalomyelitis, commonly known as ME or chronic fatigue syndrome. Sufferers complain of symptoms including extreme tiredness and fatigue, constant pain, extreme headaches and sensitivity to light and sounds.

Since being diagnosed, Natalie’s condition has deteriorated. She is now confined to her bedroom and is almost totally reliant on her fiancé, Jonathan Vaughan, to care for her. Over the past month, he has kept a video diary on his phone for our current affairs programme ‘Y Byd ar Bedwar’.

https://www.itv.com/news/wales/2019...diff-woman-left-bedbound-after-developing-me/

 

[Perrier]

And how can this portrait not engender urgency!

 

[Cinders66]

Just watched it. Natural human response to incapacitated young person surely would be to greatly step up.. urgent plans to produce change both in services provisions and medical research, governments and medical response has been to do little and argue about exercise as treatment. Nathalie isn’t the first person to highlight how severe ME is life blighting... the late Lynn gilderdale did this, now on YouTube, documentary in 1992?

That GET is a hurdle that has to be dismantled FIRST before we can get it justified that money has to go in urgently for research - some of us have been bedridden years - is beyond frustrating.

I applaud the couple for exposing their lives and if it was them that got tv to cover the story. ##MM was validating that the patient population generally is disgruntled

 

[Sly Saint]

S4C Documentary: Are ME patients being wronged by the government and NHS in Wales? | 14 June 2019

Y Byd ar Bedwar produced a really good documentary about M.E. and the lack of healthcare provision in Wales although many of the issues raised are just as relevant to the rest of the UK.

It first aired on 4th June 2019 and the reporter was Anwen Jones. You can watch the film via S4C with English subtitles. Or it can be found on BBC iPlayer again with English subtitles. Both are available for at least the next month. You can also now watch it on YouTube (below):

youtube link to full documentary and article of highlights at MEA website:
https://www.meassociation.org.uk/20...the-government-and-nhs-in-wales-14-june-2019/

 

[inox]

The mirror article links to two other articles with similar but different stories one a “recovery” from better diet. The common theme appears to be individual fundraising. Not clear to me why this sort of story gets picked up by them more than ME Association personal stories.

Hope - for the reader - and the feeling "we can do something to help this person". It's a better story.

Illness stories with the person just continuing to be very ill, and no hope of treatment, isn't something most people like to read.

Hence we've got tons of LP-stories here, and it's very hard to get othe patient stories out. It seemes to help if it can be linked to new. promising research.