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Teenager who diagnosed her own rare illness (after being diagnosed with CFS) - Times article

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
This is from The Times (of London), for which I have an online subscription. There are probably other articles out there with free access, if someone wants to get Googling (I have to go out soon and don't have time)

It's about a brilliant 13-year-old girl who figured out her own diagnosis after doctors had dumped her in the CFS waste basket.

This seems to me an excellent example of the damage the catch-all CFS conception can do.

Whatever you do, don’t google your symptoms ... Whatever dire diagnosis your search turns up, it’s probably best ignored.

Unless, of course, you happen to discover that you are suffering from a super rare condition with which only a handful of people in the country have been diagnosed. This is what happened to Amelia Ferguson. Two years ago the 13-year-old started feeling dizzy and experiencing cold hands and feet, stomach pains and shooting pains in her legs. Her parents first put it down to exam stress but within weeks their daughter’s symptoms had escalated to include joint and bone pain, nausea, reflux and constipation. Her weight was plummeting, she was virtually unable to walk and weak as a kitten.

While all tests for serious illness came back negative, her parents, Kyrste and David, were alarmed at her deterioration and sought answers from private practitioners, including a neurologist, an acupuncturist, two homeopaths and a chiropractor. “We were begging for her to be taken seriously,” says Kyrste. “She was disappearing before our eyes and it was heartbreaking.”

Amelia was admitted to Queen Mary’s Hospital for Children in Carshalton, Surrey, which diagnosed chronic fatigue syndrome and put her on a drip. By the summer of 2014 she was almost completely bed-ridden. At her lowest she was unable to swallow. “I was no longer able to live my life properly so I’d spend seven or eight hours lying there searching for a cure,” she says, speaking from the family home in Esher. “I didn’t feel like I was getting the right treatment.

“We wanted to believe it was chronic fatigue. Half a dozen specialists were in agreement,” says David, a financial adviser. “They kept saying, ‘We’ve seen this before, trust us, stop worrying.’ We wanted to believe it, but she was fading before our eyes and we were racking our brains for a solution.”

While her parents racked their brains, Amelia took to her iPad. Instead of watching teen vloggers or cat virals, though, she began sifting through medical research.

In December Amelia found a medical paper about a 13-year-old girl in Australia who presented with the same symptoms and the same chronology — the Australian girl’s symptoms began shortly after she had received the HPV (cervical cancer) vaccine, just as Amelia’s had. It suggested that Amelia might have pandysautonomia, a rare autoimmune autonomic neuropathy.

She’s currently in remission, though still weak from the ravages of pandysautonomia and the side-effects of the drugs, so she can’t yet be fully discharged from the Evelina. She intends to embark on a career in medicine but just wants to get back to playing sport regularly first. “I think you have to trust doctors to some degree but if you have been in their care for some time and you have a gut feeling that something is not right you should take matters into your own hands and try to find the answer,” she says.

“But when you start googling you have to take everything with a pinch of salt. There are some very useful sites out there but some people, no offence, write a lot of nonsense. You have to be sure who’s writing knows what they’re talking about.”

[my bolding throughout]

It's a long article so I've quoted a bit more than I usually would from a newspaper (hope The Times will forgive me) but it's interesting stuff.

Link for anyone with Times access: http://www.thetimes.co.uk/edition/times2/how-a-teen-diagnosed-her-own-rare-illness-gct2gd2qx
 
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barbc56

Senior Member
Messages
3,657
I've gone to the site but can't access the whole article. If offers two types of memberships but it says nothing about cost other than you need to put in information to get the price.

Did I misread or is the Is the quote above the full article?

Edit.

The only reference to this story when I googled was the above source.
 
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sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
I've gone to the site but can't access the whole article. If offers two types of memberships but it says nothing about cost other than you need to put in information to get the price.

Did I misread or is the Is the quote above the full article?

Edit.

The only reference to this story when I googled was the above source.

I'm afraid it's paywalled and subscription-only, barbc. That's why I quoted quite a lot. You would have to sign up for a full, ongoing subscription to access it. I don't think I can quote more than I have without treading on copyright toes.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
It does go to show that there is a feed back loop in medical diagnosis.
The HPV vaccine is new.
A disease may be rare simply by virtue of being rarely diagnosed (don't mean to suggest this particular disease necessarily).

Are we seeing the opposite effect in the UK re ME. Now that they've rolled out an 'effective' treatment anyone can be diagnosed with it (and are) --trust them.

This article coming from the Times must rankle-- I don't think they've BPSed that particular disease yet.
Thankfully for the clever young lady she now might get proper treatment.
 
Messages
5
In the UK, and also in other countries, the pattern seems to be that girls are developing autonomic problems (dysautonomia) after their HPV vaccination - many of them meet the diagnostic criteria for POTS or Complex Regional Pain Syndrome, but many also have the same cluster of autonomic related symptoms but don't meet the diagnostic criteria for POTS. It depends which country you are in for the diagnosis you're given. In the UK it's usual for the girls to be given a diagnosis of Chronic Fatigue Syndrome, told there's no treatment other than pacing, CBT and GET, and left to their sick beds. The 'lucky' girls, like Amelia in the article, are switched on enough, or have someone close who is switched on enough to start Googling and digging and they find their way to a dysautonomia diagnosis, for which there is treatment, but no cure.

Naturally the powers-that-be deny any link with the cases of dysautonomia and the HPV vaccine, but there is an increasing amount of research and case studies to rubbish this view and to make a case for proper studies. Whether it will happen or not is anyone's guess, but the numbers will soon be too hard to ignore. In Denmark, regional centres have been set up specifically to assess girls with serious health issues after HPV vaccination, and at one of the centres, the doctor is on record as quoting 1 in 500 girls vaccinated is suffering serious adverse reactions. A support group in Ireland has also estimated from their membership that approx 1 in 500 vaccinated are suffering serious adverse reactions to the HPV vaccine.

Disturbingly, but similar to ME patients - a lot of these young teenage girls are being diagnosed with mental health conditions such as Anxiety disorder or Conversion disorder. Getting taken seriously is very difficult, as you well know, and more so if you're a teenage girl!!
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Disturbingly, but similar to ME patients - a lot of these young teenage girls are being diagnosed with mental health conditions such as Anxiety disorder or Conversion disorder. Getting taken seriously is very difficult, as you well know, and more so if you're a teenage girl!!

I think that's one of the most worrying parts, Caron. Amelia's parents said they more or less hoped that she 'just had chronic fatigue'. Clearly they had picked up from the 'experts' that this would be pretty normal [for a young girl!] and nothing to worry about.
 

Forbin

Senior Member
Messages
966
Does this have link to guillain barre

Both pandysautonomia and Guillain-Barré syndrome seem to fall under the heading of "acute autonomic neuropathies."

http://www.medmerits.com/index.php/article/acute_autonomic_neuropathies/P2


It's interesting that the section on pandysautonomia also says:
In approximately 50% of subjects with a viral infection, infectious mononucleosis, rubella, or Herpes simplex infection precedes acute pandysautonomic neuropathy. This, as well as the acute onset and presence of perivascular mononuclear cell infiltrate in the epineurium, suggests that the etiology is likely to be immune-mediated (Suarez et al 1994).
 

natasa778

Senior Member
Messages
1,774

barbc56

Senior Member
Messages
3,657
@natasa778
I get an error message when I clicked on your second citation.

The only thing that comes up when I google are the threads here and several sites where you are redirected to the original article which is behind a paywall. On the second page a video consultation service, an anti vaccine and another ME/CFS site are the only references I could find.

The complete article can be found here!

While these sites, in themselves may be reporting a valid story, it still bothers me that this isn't widely covered in the media. I don't buy into any conspiracy theories.

With so little information, it's hard to know what to make of this story.

Disclosure. My googling skills sometimes suck. If anyone can direct me to a site, it would be appreciated.

Thanks!

Edit. I am replying to the first post @

http://forums.phoenixrising.me/inde...er-own-rare-illness-written-off-as-cfs.46459/

@Kina @Sushi Should these threads be merged?
 
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natasa778

Senior Member
Messages
1,774
@natasa778

While these sites, in themselves may be reporting a valid story, it still bothers me that this isn't widely covered in the media.

Yeah, if something is not widely reported by the mainstream media then it cannot possibly be happening. There is no reality outside what MSM tells us. For real!!

:wide-eyed::wide-eyed::wide-eyed::wide-eyed::bang-head: