• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Rickets Returns to UK - Vitamin D uptake blocked?

Messages
5,238
Location
Sofa, UK
This news broke some months ago but has been reported again this week, and my recent reading of the GcMAF threads made it seem like an interesting development...because rickets is a condition of Vitamin D deficiency, and as we're well aware (but others seemingly are not), vitamin D deficiency is not necessarily caused by lack of sunlight...

Global Health Watch: Rickets showing up in some British children

http://www.latimes.com/health/boost...ts-britain-20110119,0,2247926.story?track=rss

"Rickets, a bone disease caused by vitamin D deficiency and which used to stalk the poverty-stricken slums of 19th century England, has reappeared in modern Britain.

In the southern port city of Southampton, Tyler Atrill, 12, an active girl who always played outside in one of the sunniest areas of Britain, was diagnosed with rickets last November, the Telegraph reported this week. Tyler's mother Lisa, who is a nurse, told the newspaper that her daughter had been suffering severe leg pains for three years and was finally diagnosed with a disease thought to have disappeared from Britain in the 1920s.

Tyler is one of more than 40 children treated for rickets in the last year by Southampton General Hospital. Dr. Nicholas Clarke, an orthopedic surgeon from the hospital, said the phenomenon was "quite astonishing. We are seeing cases across the board, from areas of deprivation to the middle classes. ... This is almost certainly a combination of the modern lifestyle, which involves a lack of exposure to sunlight and covering up in sunshine."

Lisa Atrill said she covered her children in sunscreen whenever they went out in bright sunshine.

There are no official figures, but doctors around the country say a number of cases have sprung up in recent years. Last year the British Medical Journal published findings of the spread of the disease in the United Kingdom, quoting a survey showing "more than 50% of the adult population have insufficient levels of vitamin D and that 16% have severe deficiency during winter and spring.

Particularly at risk are people in northern England and Scotland, where statistics of other bone-related diseases, multiple sclerosis and rheumatoid arthritis are higher than in England.

In September, the Scottish government launched a campaign advising people to take vitamin D supplements to make up for the lack of sunshine."


A few things to note...

- Dr Clarke claims to have discovered this cluster of rickets cases, but the findings are - of course - controversial (since they are unexpected). This report goes further than I have read before and says that "doctors around the country say a number of cases have sprung up in recent years". So it would seem to be a more widespread, and thus a genuine, phenomenon.

- It is most interesting, then, that there appears to be something of a cluster of cases in Southampton that has been identified.

- Despite Tyler's mother's assertion that her daughter - one of the rickets cluster patients - was "an active girl who always played outside in one of the sunniest areas of Britain", Dr Clarke imagines (without, apparently, any evidence beyond his knowledge that rickets is caused by lack of sun and people don't get out much these days) that "This is almost certainly a combination of the modern lifestyle, which involves a lack of exposure to sunlight and covering up in sunshine". A quick consideration of the logic of this hypothesis will reveal that this explanation doesn't fit the facts at all and has very poor explanatory power - although it is the first, most obvious, and most conventional assumption for the medically trained - but the possible alternative explanations are far more interesting....

- One can easily imagine how doctors and researchers will now spend a lot of time and money investigating the levels of exposure to sun of those affected, by asking them a whole load of leading questions about how much time they spend outside, how often they use sunscreen etc...and then go on to focus research on this hypothesis with continuing confirmation bias...as well as focusing research on supplementation treatments rather than on trying to find the cause...

- "Particularly at risk are people in northern England and Scotland, where statistics of other bone-related diseases, multiple sclerosis and rheumatoid arthritis are higher than in England." - most interesting, since those areas of high MS incidence, and high incidence of other ME-related conditions, are already of great interest, and this geographical pattern remains a big clue to...something...though not, I expect, to the genetic factors or levels of sunlight that have generally been assumed and investigated so far...Southampton (on the south coast) is NOT where you would expect your first rickets cluster for a century...instead, perhaps we should be looking towards the distribution of viral strains for an explanation...

Anyway...the point of posting this is to suggest a possible connection to the early GcMAF findings, where it seems that ME non-responders to GcMAF treatments (20%) are those who have a mutation in a gene involved in the Vitamin D receptor.

Since we are coming from an experience where vitamin levels are deficient, not due to lack of eating the right foods, but instead due to malabsorption, methylation blocks, and consequent deficiencies of the relevant enzymes...and since we know that genetic factors almost certainly play into those deficiencies but that a chronic infection likely also plays a role...then we have a ready-made hypothesis for this rickets resurgence, which is not what the scientists will be thinking about right now, and that's the combination of a virus/retrovirus with genetic weaknesses related to Vitamin D absorption/synthesis.

If the rickets resurgence is to be explained, after a century of eradication, during which time plenty of people have spent much of their lives away from the sun and not got rickets, and if rickets is occurring in clusters now, then we are looking for something environmental and/or infectious (most likely viral) that somehow interacts or interferes with Vitamin D absorption...and that's the most logical thing to be considering in relation to rickets, in light of the evidence available about this resurgence - so it's more than interesting that the early XMRV/ME/GcMAF research is pointing towards exactly that...

I do think that our best hope (after the WPI) may turn out to be breakthroughs in other conditions like MS or Alzheimer's, which may well end up unlocking the secrets of ME along the way.

The slightly worrying thing is to look at those areas of medicine, informed by some knowledge of ME/CFS, to see a series of quite natural hypotheses to explain how they could all be connected, and then to realise that those kinds of hypotheses are barely being considered at all in any of these other conditions either!

But still, I've been really, really struck by developments re: Alzheimer's and Multiple Sclerosis in recent months, because more and more it seems that all kind of neurological conditions and so-called "mental illness" conditions may ALL be related by a common pattern - and the key to understanding that pattern may turn out to be the lifecycles of viruses and retroviruses that infect the nervous system.

There's now decent evidence of the presence of an unknown virus or viruses in MS, Alzheimer's, schizophrenia, and ME/CFS. These may well turn out to all be the same virus, or a related familiy of viruses, and indeed it may even turn out that all these viruses are in fact XMRV - the WPI-reported findings of XMRV in other patient populations do seem to be pointing in that direction...

It's a really exciting possibility: maybe, just maybe, we are on the brink of understanding the viral and retroviral etiology of the whole range of "mental" (nervous system) diseases. The scale and significance of such a breakthrough would be immense!
 

Merry

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
Thanks, Mark.

You've reminded me that one of my brothers was diagnosed with rickets when he was a small child. This would've been the mid to late 1950s. No sunscreen in those days, and we played outside a lot.

And the brother with rickets I would say has Asperger's Syndrome.
 
Messages
5,238
Location
Sofa, UK
Wow, thanks for mentioning that, Merry. The connections we're seeing must look even stronger to people with family connections like that, I would have thought?

I don't know whether you've followed the GcMAF threads, but if you can follow the genetics info, the gene typing results that have been discussed recently are fascinating. It seems as though the people with the Vit-D receptor mutation are the ones that aren't responding to GcMAF, which seems to suggest that there are multiple reasons - perhaps different genetic reasons, or infections - why Vitamin D absorption can be impaired, and this plays a key role in ME/CFS, perhaps together with other vulnerabilities. (My model would be that there are various ways that the body responds to the relatively novel XMRV, depending on individual genetics, and that XMRV will tend to expose such genetic vulnerabilities).

With the advances in gene-typing, the progress on this front over the next few years is sure to be explosive - there's great grounds for hope there. I read the other day that one can get a full personal genetic sequencing (not sure of the details exactly what you can get - just screening for known conditions perhaps?) for $10,000 now. As that price continues to drop, it should be quite viable for us to examine our own genomes using online tools, and identify for ourselves the mutations that may be relevant to our illness! The GcMAF-related genetic analysis is just really exciting, I think the 'subsets' will be right there in data like that - if I had a bit more time, I'd be crunching through that spreadsheet data right now :)
 

Merry

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
Thanks again, Mark, this time for pointing me to the GcMAF thread. I saw the thread title day after day but had no idea what it was about and never checked. "GcMAF" sounded too hard, like something likely to hurt my brain. But I will look now.
 

Enid

Senior Member
Messages
3,309
Location
UK
Quite agree - the WPI seem to be unlocking so much in interrelated "conditions" now. Feel much of old school thought will be swept away soon as more pathogens and their fiendish damage revealed.
 
Messages
5,238
Location
Sofa, UK
Thanks again, Mark, this time for pointing me to the GcMAF thread. I saw the thread title day after day but had no idea what it was about and never checked. "GcMAF" sounded too hard, like something likely to hurt my brain. But I will look now.

Me too Merry! Seems like it's been around for ages but I'd been putting off finding out what it was about - so much else going on and it did sound technical. But I scanned it the other day, and the genetic testing results look extraordinary to me: even forgetting about GcMAF for a moment, results like those have the potential to both illuminate and validate ME/CFS as a biological/physical condition, and I hope there'll be much more genetic profiling work done soon - and published.

I should post about all that on the thread itself - but there's one set of results that looked very suggestive: there's an allele of one of the genes that is completely absent in all the PWC tested, and if you look at the less statistically solid correlations for that family of SNPs, it's at 0% for all of them in the PWC, which is unexpectedly low. My interpretation of that is: it ought to mean that, if we had that particular allele, we wouldn't have got ME - and thus once we work out what role that gene plays, that could lead to treatments.

If you find that spreadsheet, try googling the index numbers of the genes (which run across the top of the page). I just find it amazing the way you can explore through the genome, online, down to the level of the raw genetic code; I also love having access to all the raw data in that spreadsheet and I want more, more, more of it! I can easily see myself spending the whole weekend analysing all that data! :)
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
1) IIRC there was similar back in the 80s, at the time they thought some of it was due to stupid "health food fads" for kids, at least for the well off families
ie banning chocolate, fatty sweet stuff etc and very restricted diets based on clap-trap diets
as healthy active kids need lot of calories and varied food such diets were damn stupid.
Even so, some of it was puzzling. with kids who shouldn't have, getting rickets.

2) Lack of sunlight *IS* an issue
Up here we didn't see the partial eclipse not only cause it was cloudy, ha, typical Uk weather! ;)
but because the sun was extremely low on the horizon, even at 9 am it was barely above the horizon up here.

The UK is very damp due ot the Gulf Stream, now, Nordic countries for example, as far as I am aware, are not so damp??
Anyway, freezing fogs and damp cold soaking into your bones is no joke, sigh, so in such weather it's plain foolish to be out.
Huge difference between "dry frosty day" and damp freezing conditions, ick

3) Much poorer lifestyles in Northern Uk cannot be ignored either.
Living near Glasgow, in an area wrecked by the butchery of the industrial regions and working class during the 1980s...it's no joke to me.
It's very damn easy for some smug git in a Whitehall office to blame poor diet on our health as if it's our fault, when THEY'VE never been poor so have no idea what the Hell they are talking about, as per usual :/

The Highland Clearances and Irish Famines, problems in Baltic states etc crammed folk into the hellish industrial areas of the 1800s to early 20th century, it was, to coin a phrase "Satanic".
So the Scots, who had once been the tallest people in Europe (at least the Highlanders were), ended up REDUCING in stature, and disease and early death rates went ballistic.

As we now know, "epigenetics" means such terrible stresses have seriosu effects on on the physical and mental health of such people's offspring for many generations.

You can go only a few miles from an affluent neigbourhood, to one striken by privation, and see average lifespan nearly half.
Ordinary folk did not have fridges typically until the 1960s, which also meant death and ill healthy by food poisoning was rampant.

And these are not climes to grow Mediterranean food! The ordinary man coudl not afford such anyway.

Today, yes you can get better foods, but the prices are still serious block to the oridnary Joe using them.
The REAL income of ordinary folks in many parts of Scotland varies from 10000 to 16000, varying on area

also, many places, like where I live, are dosed in heavy metals and other legacies of the uncaring, greedy, evil, stupid industrial past.

4) having said all that, there is the fact there's much less genetic variation in Northern UK, and in UK generally as we're an island nation.
Such makes occurences of unusual disease by similarlity of genetics more likely.

poor diet, lack sunlight, rampant disease in the slums of 1800s as breedign grounds for pathogens adapting to Humans, similarities in immune systems due to gross similar genetics all mena that we could be more liely to whatever organism causes ME (at moment almost certainly XMRV we believe and hope)

however...
where those arrogant, smug, despicable eugenicists fall down, not just counting epigenitcs, is that weakness to one thing, may mean strength versus another.

Immune systems cannot be a "100% absolute barrier" cannot work that way, they cannot be "super" versus everyhting or you'd en dup with autoimmune problems right off. much like Sickle Cell evolved to protect Africad and Southern Mediterranean people against malaria, for all we know, the instances of MS, ME etc here, could be a factor due to dealing with other illnesses
For exmaple, what if by evolving to deal with tuberculosis, we have been left open to ME?


If we could only find exactly what cuases ME, for 100% sure
back track it to find where it started from
find out what caused it to thrive in us
and thus work out much about it

5) It may well be that XMRV and maybe a few other pathogens, cause a huge amount of the illnesses we suffer from, just showing up in different forms, based on the victims nevironment and genetics.
So medical science, watning simple answers for individual illnesses has completely overlooked that a few unusual pathogens can cause a wide variety of effects.

For example, see how syphilis can have very varied effects on folk, with some recovering, and some suffering total breakdown of their nervous system and thus death


interesting thread :)
 
Messages
5,238
Location
Sofa, UK
Wow! Love your post Silverblade, it's jam-packed with sharp observations that seem to completely pass over the heads of our country's 'finest minds'...

I learnt a lot from what you wrote about theories relating to Scotland's health problems, you gave me a lot to think about there. I've long ago got to the point of being thoroughly fed up with this blind obsession with blaming the victims' "unhealthy lifestyles" as the only factor worth discussing - and this from people who have absolutely no idea what the reality of poverty dictates, and from people whose politics are responsible for that poverty, to boot! But I hadn't got as far as considering the impact of colonial history on the current health of colonised populations, and what you wrote about that was fascinating, while of course being a very sad and shameful history as well.

A few snippets to come back on...

IIRC there was similar back in the 80s, at the time they thought some of it was due to stupid "health food fads" for kids, at least for the well off families
ie banning chocolate, fatty

So what's new, right? Any unusual observation always seems to provoke this sort of knee-jerk reaction against whatever aspect of modern life the people in charge happen to want to rail against. With no evidence at all, policy can be produced based on popular arguments like this. Most depressing. Whilst on that subject, what about that obesity epidemic eh? The viral theory of the obesity epidemic still doesn't seem to be receiving its fair share of attention (except from the barmy army of "sceptics", I imagine)....

Lack of sunlight *IS* an issue

Well, sure, for you, no doubt! :)

But for Southampton?!...

As we now know, "epigenetics" means such terrible stresses have serious effects on on the physical and mental health of such people's offspring for many generations.

Really good point; I find that science fascinating too, because it's been so heretical for so long to even consider anything that sounds a bit "Lamarckian" that there are sure to be loads of evolutionary processes going on there that have been greatly understated.

where those arrogant, smug, despicable eugenicists fall down, not just counting epigenitcs, is that weakness to one thing, may mean strength versus another.

OMG you just keep throwing these pearls out there! :)

I used to work with one such as you describe: perhaps the most brilliant mind I've encountered, in many ways - he taught himself to do quantum mechanics calculations as a hobbyist thing in his spare time - but in this respect, he was spectacularly simple-minded.

As they say: it takes a world class education to produce such stupidity...

It may well be that XMRV and maybe a few other pathogens, cause a huge amount of the illnesses we suffer from, just showing up in different forms, based on the victims nevironment and genetics. So medical science, watning simple answers for individual illnesses has completely overlooked that a few unusual pathogens can cause a wide variety of effects.

Absolutely - I'm constantly being amazed at the way the possibility that one pathogen can cause multiple effects has been met with such bemusement by so many people. It's staggering how much people seem to know about what the completely unknown can't be like, and the way they assume so much...lack of imagination, ultimately.

My thinking on this topic over the last year has been a gradual opening of my eyes to the idea that it's actually at least as reasonable to expect that all (or most) of these medical mysteries - so many of which lie in the neurological domain - will be cracked by a single medical breakthrough. We should be asking: what do all the mysteries that we don't understand have in common? One thing is: a whole lot of them are neurological conditions - perhaps including all of mental illness in that - so it's reasonable to hope that if an explanation for one of these were found, it would at the very least suggest a great deal about all the others. A class of previously undetected viruses that behave in somewhat unusual ways and have an affinity for nerve tissue, sounds like a damn good candidate to me...


Anyway...while your thoughts about factors behind Scotland's health issues are most interesting, I'm going to have a hard time discarding my own theories on that subject, which come from an analysis of what's known about distributions of MS, in light of what XMRV suggests. Without going into too much detail, the geographic distribution is absolutely striking, and apparently related to climate in some way...however it turns out that the environment one grows up in (up to about 12 I think) is what determines susceptibility later in life. Also, the modern epidemic of MS (since the mid-80s, like all these epidemics) has a different gender distribution to 'classic' MS.

So: the two main theories about that seem to be (a) genetics of the population, and (b) levels of sunlight. The bleedin' obvious, in other words. And yet when you look at the data, like the world map of distribution, there's far too much that doesn't fit with either hypothesis...hence the apparent complete lack of progress so far with these lines of inquiry. Whereas: if one considers the possibility that the local flora/fauna populations may lie behind the distribution, it gets a bit more interesting. You have certain mold/fungi that grow in certain conditions - might their distribution be related? You have particular genetic variants of mice in particular territories, carrying different genetic variants of viruses - potentially relevant perhaps?

What always winds me up is the way people always want to set up an either/or and fight it out - even when both sides are likely true in what they're saying but it's clear that neither has the whole story, nor even the key to the matter. "Nature vs Nurture" - what a dense phrase! Identifying genetic factors does not prove that something can't be caused by a virus. A statistical link to lack of sunlight might be a factor that plays out in a very tangential way, and illuminates little or nothing about the underlying aetiology. It does not mean the actual cause can't be a virus.

Wish more people had the sort of vision of the possibilities and the multiple factors at play that you do, Silverblade.