Big rise in number of youngsters treated for chronic fatigue www.cambridge-news.co.uk

Published: 15/08/2010 00:00 - Updated: 13/08/2010 19:38
Big rise in number of youngsters treated for chronic fatigue Jack Grove http://www.cambridge-news.co.uk/Hom...of-youngsters-treated-for-chronic-fatigue.htm
The number of youngsters diagnosed with chronic fatigue syndrome in Cambridgeshire has almost doubled in five years, new figures reveal.

Ninety children between the age of 5 and 17 are currently receiving treatment and support for the debilitating illness compared to just 50 in 2004, when a special unit was set up to help young sufferers.

Very little is known about the illness, also known as ME (myalgic encephalomyelitis), which can leave sufferers exhausted after little or no exercise.

It is most frequently diagnosed in people between the age of 40 and 59, mainly women, but it is also on the rise among younger people.

Community childrens nurse Jane Readman, from Cambridgeshire Community Services NHS Trust, said: Were seeing many more cases than we did when the specialist service began.

I think there is a better awareness among the general population about it and more GPs are referring children.

People dont realise but it is actually the most common reason for long-term school absence.

She added: It is usually triggered by a virus and its often regarded as post-viral fatigue. Its not just tiredness, however. There are very specific symptoms, such as extreme sensitivity to noise and light.

Its like if youve ever had flu every muscle and joint will ache.
We help people to manage their activity to conserve their physical and emotional energy.

The idea is the same as the battery going flat on a laptop or mobile phone. If you run it flat, it will take a long time to recharge, but if you top it up frequently, you can keep going for longer.

About 250,000 people in Britain suffer from chronic fatigue syndrome (CFS), according to the ME Society. Opinion is divided over the cause, with genetic, physical and psychological factors all believed to play a part.

Jane Marshall, from Duxford, whose 11-old-year son Tristan was diagnosed with CFS in 2007, said the illness was devastating.

She said: Tristan could only attend school for three hours a week at one stage. It meant I had to change my work patterns completely.

Hes now doing 17 hours a week, but he cant go to the local community college with his friends because its just too big and it would exhaust him. Were having to pay for him to attend a smaller private school.

All he wants to do is go to school and play with his friends, but he cant because he is too tired.

She added: I come from a nursing background, I can tell its not a psychological thing. He feels dizzy and very hot he cannot go anywhere.
He was only diagnosed when the doctor excluded everything else. It was scary not knowing what it was.

Without the health team, I dont know what we would do. They dont have them in every area of the country, but we would be lost without them.

 

Surprise, surprise. How good are the statistics really? What's the bet that it's uniformly distributed throughout the population, as well as geographically - or will be very shortly. There simply isn't enough study on this.

 

We're coming up for a decade of the CFS centres about - has anyone done any work to see if they're actually helping reduce the number of people with CFS?

 

I was watching the Invest In Me 2010 Conference dvds (http://tinyurl.com/36v8hrx) the other night, and near the end of the opening round table discussion someone mentions that since the XMRV study appeared in Science last Fall, there's been a huge increase in the number of young males coming forward with the illness. Dr. Cheney mentions he's seen an "explosion" of new male patients, primarily between the ages of 15 and 25. Annette Whittemore said the same thing, and wondered who has been treating these people. Then Leonard Jason mentioned we need a large epidemiological study to find out the true prevalence of ME/CFS. Dr. Klimas said to that something like, "and when you do that study Lenny, you know what I'll bet you'll find? A huge percent of the young male patients have been put on strong psychotropic drugs." I thought it was very interesting.

 

At least some of the researchers are openly doubting the figures. There have been many injustices.

 

It's all a guess. No statistics, don't want to do that, might cost money.

I would have thought, if XMRV is it, which I really think it is, it's very common across the UK. We know about the outbreaks pre 1980's, so what would we also be aware of if they had continued to record outbreaks?

 

According to the 2001 census, the population of Canbridgeshire children aged 5-19 was 52,000, let's say 45,000 children aged 5-17, the age group covered by the CFS report. With 90 CFS cases that works out at a prevalence rate of 0.2%, or 200 per 100,000 people.

This is roughly in line with the lower level prevalence found in ADULT population studies in the USA (Jason, Reeyes), but a lot less than the most recent CDC estimate of adults of around 2.5% (Reeves). Wessely also claimed a similar high level, 2.5%, in a 1990s UK study, again in adults.

So, if these new figures are reliable, and CFS is distributed evenly both geographically and throughout age groups (2 very big 'ifs'), then they support the lower prevalence rates, down around the 0.5% level. Critics argue that the higher prevalence rates use definitions of CFS that include many people with primarily psychological problems.

Don't know if this helps much, but i thought I'd do the numbers anyway.

 

Absurd notion that XMRV stops at the border or couldn't swim. Dark Ages thinking. Next we'll have Wessley on the cliffs of Dover waiving incense to keep back the plague. It's has been around for at least fifty years, had time to go around the world several times. The virus is not limited by climate, nor does it seem to be restricted to a narrow genetic stock. There may be a genetic weakness involved, but that weakness seems to be very widespread.

 

I find it interesting (not a bad thing) that everyone interprets this differently.
I just came from the "Family incidence of ME Poll thread" so this news makes me think (with all the caveats appropriate for such partial and preliminary statistics):
Aha - so since transmission of ME seems to be at least as much vertical(familial) as horizontal(partners) - then it is just a function of time before more pre-pubescents are diagnosed with it.
....so this reported rise in ME incidence in youngsters fits the model.
Sensing Progress's link to "Dr. Cheney mentions he's seen an "explosion" of new male patients, primarily between the ages of 15 and 25. Annette Whittemore said the same thing" fits too.

 

Ahahaha, good one. Wesseley with his censer is an image worth keeping!

Fifty DAYS is enough time for the virus to have been around the world several times. Especially if, as seems likely, it's spread by casual contact unlike harder-to-catch viruses like HIV and Hep C...both of which also travel quite well and don't seem to have passport trouble at natonal borders.

It's a little befuddling how the quick-and-dirty studies looking for XMRV in European patient populations (using the wrong patient definitions and the wrong testing methods) all hypothesized that "maybe we don't have XMRV here." Sure, maybe there is a magic bubble over Europe and XMRV is only found in one weird Nevada microclimate.

 

Originally Posted by sensing progress
Dr. Cheney mentions he's seen an "explosion" of new male patients, primarily between the ages of 15 and 25. Annette Whittemore said the same thing, and wondered who has been treating these people. Then Leonard Jason mentioned we need a large epidemiological study to find out the true prevalence of ME/CFS. Dr. Klimas said to that something like, "and when you do that study Lenny, you know what I'll bet you'll find? A huge percent of the young male patients have been put on strong psychotropic drugs." I thought it was very interesting.

RustyJ: "At least some of the researchers are openly doubting the figures. There have been many injustices."

Muffin:-->> Any quesses as to why the higher numbers found in men between ages 15 to 25? Not meds, but something else? Vaccines? Viruses? Better reporting? All of the above? Other thoughts???????

 

Masturbation? Drugs?

We get a whole load of new stereotypes to replace those that surround middle-aged women.

 

I may be doing it wrong, but how do you get XMRV from masturbation?

 

this makes sense.. seeing its being passed on mother/father to child (or maybe mother to child during birth?? and breastfeeding like AIDS is transmitted). I too have noticed many more males in that age group who obviously have CFS and are seeking a diagnoses.

Ive hung out at a site for years and years in which people go when they have an unknown illness and havent been able to get a diagnoses from their doctors. This year.. far more males then ever before are showing up there with CFS/ME symptoms (interestingly less females are thou). (is their an epidemic of XMRV in our children?)... maybe those guys have parents who are just carriers of the virus but dont have symptoms and now that they are hitting their working years.. and crashing due to work and family commitments etc.. maybe its coming more to the fore there.

Maybe the symptoms showed several years earlier in this generation wave, in the females due to hormones (several years back there was a ton of females with CFS/ME symptoms trying to find out what was wrong with them). I cant figure out why now (this year).. much less females at all with these symptoms are going there to try to find a diagnoses. (its only been one female and two young guys of the above age group in the past two weeks.. used to be in previous years 2-3 females a week, its been that way with this shift for at least all this year compared to 3 or more years back).

**wonders if Cheney and Annette are finding what i am, that less new females are showing up in regards to diagnoses.. thou the young males have increased (id say three or four fold)?**

 

Possibly add BPA to that list http://www.montrealgazette.com/health/Younger Canadians have more system/3407122/story.html

The Statistics Canada study, conducted in partnership with Health Canada, found that nine out of 10 Canadians aged six to 79, or 91 per cent of the population, have BPA in their urine.

But young people aged 12 to 19 had an average level of 1.50 parts per billion -- higher than the overall average of 1.16 parts per billion.


BPA has been called an endocrine-killer, estrogen-mimicker and "There is no safe level".

 

The thing that has always surprised me about Dr Cheney, is the fact that he has had a heart transplant and will be on a load of immune suppressing drugs and yet he is dealing fulltime with patients who may well have a retrovirus and possibly other viruses,which up till now doesnt appear to have affected him.

Perhaps it proves that the XMRV is not readily spread from person to person by contact alone because he would be the perfect
" Canary in the coalmine" to prove this with his immune suppression.

 

liverock,

You were wondering how someone like Dr. Cheney has not be infected by his patients. I remember reading (around 1995?) that one of Dr. Cheney's nurses had come down with CFS. I think this followed a needle-prick when she was drawing blood.

My memory is not great, so correct me if I am wrong, Dear Readers.

The doctor I was seeing in the early 90s for CFS reported to me during an office visit that one of his nurses had fallen ill with CFS.

Rafael,

I share your interest in estrogen-mimicking chemicals and wonder what effect they might have on XMRV. I'm particularly interested in this because my family drank water that came from a shallow well at the edge of a field that was every year sprayed with pesticides and herbicides. I would guess that the the application of chemicals was high in the 50s and 60s when I was a child.

Merry

 

So what? You think middle aged women don't masterbate?

It's really interesting, I've been reading on the AIDS epidemic and comparing it to the CFIDS epidemic.

There are a lot of similarities and things to learn from that.

In the beginning the CDC only knew of cases among gay men. Then AIDS started cropping up in Haitians.
I have never heard an explanation for why it was showing up in Haitians.

Did the virus mutate? Is our virus mutating?

They do do that.

Both HIV and XMRV are retroviruses of course. It's amazing to see the similarities, not only in the reaction and spread, but also in the politics. Ugh.