


New WHAT ABOUT ME? Teaser/Trailer from Double D Productions on Vimeo.


I don't know how much of what follows is actually true, but this is how it feels, and this blog comes to you today care of the letter W for Wessely, triggered by this BBC story about Gulf War Syndrome.
I'm not any more familiar with Gulf War Syndrome than anyone else, but a quick look at Wikipedia reveals the line "Approximately 250,000[4] of the 697,000 veterans who served in the 1991 Gulf War are afflicted with enduring chronic multi-symptom illness, a condition with serious consequences." .. that [4] being a citation to the Office of National Statistics. So where I thought Gulf War Syndrome affected some of those who served in the first gulf war, I had no idea it affected more than a third of them.
At the bottom of the BBC story are some comments by Professor Simon Wessely, director of the King's Centre for Military Health Research in London and an adviser to the Ministry of Defence. The article states that "He does not believe Gulf War Syndrome exists as a distinct illness".
We have to be careful here, because one of the goals of a newspaper is to get you to react. What's going on here, I think, is detailed in this article about the difference between a disease and a syndrome: basically a disease is something with a known cause and course, whereas a syndrome is a collection of symptoms that are known commonly to occur together but for which there is no known cause. So to be fair to Wessely, being a professor, I think he will be using very specific terms that mean a lot to his peers but which mean different things in common usage and the BBC is using that to wind us up.
Now, I used to be involved in the protests against genetically modified foods and what I learned there is that spokespeople will turn up and say something like "there is absolutely no evidence that genetically modified crops will cause any harm to wildlife". What they mean is, no-one has studied that. And no-one has studied it because there's no money in so doing. What we want to hear is "the effect on wildlife has been extensively studied, and we know there is no effect".
So, here we go with Gulf War Syndrome, from the same BBC article: "An MoD spokeswoman told BBC News: 'We have long accepted that some veterans of the Gulf conflict are ill and that some of this ill health may be related to their Gulf service. The UK and the US have undertaken a substantial amount of research into Gulf veterans' illness. The research has indicated that there is no illness which is specific to Gulf veterans.'"
OK, that does say there's research, but clearly there is insufficient research to work out what caused Gulf War Syndrome. We know there is gravity, we just haven't done enough research to be able to say with certainty what gravity is. That doesn't mean gravity doesn't exist, it means more work needs to be done.
Again from the BBC article, "Sue Freeth, director of welfare at the Royal British Legion, fears 'A lot of veterans, because they haven't been able to find treatment, have decided to stop looking because they think nobody cares any more. Some of them are getting support from their GPs or their Primary Care Trusts but certainly some veterans we talk to are not getting any support unless they can pay for it privately.'"
So, as an aside, everyone still happy with funding going to GPs?
Here's what I've been working towards, from that article: "I don't think we're ever going to be able to take it any further now," says Professor Simon Wessely. "Even if you gave me £10m [for research], I wouldn't know what to do with it."
Great.
The ME/CFS link? Wessely is a government advisor on ME/CFS and devised the graded exercise programme that doesn't work and was widely implemented. Wessely's central premise is that ME/CFS is primarily a psychiatric illness (which is how the NHS treats it, based on his recommendations). The people he accepts as having ME/CFS into his trials probably haven't got it, they have mental illnesses. They then get better on graded exercise and hey presto, Wessely has a cure for ME/CFS. It's a circular system based on his disagreement about what ME/CFS is.
The Canadian Consensus Definition is the best way to determine whether someone has ME/CFS or not. Wessely doesn't use that.
So, anyone see any links here? Could it possibly be that Wessely's research department and career is somehow funded by interests that would rather not either pay out damages to people suffering from Gulf War Syndrome or ME/CFS or fund effective NHS treatment?
So, no-one with money wants to find a cause or cure for ME/CFS because the cure costs. Enter Annette and Harvey Whittemore and their daughter, Andrea Whittemore-Goad. She has ME/CFS, and her parents had $5m to spend so they set up the Whittemore Petersen Institute (WPI) and four years later announced they had found an association between ME/CFS and XMRV, a human retrovirus. There are only three other human retroviruses, two are herpes and HIV, the other causes cancer.
In the UK, we love our NHS. Free healthcare, wonderful. But to be honest, the shine is a little less glossy for me now I'm trying to do the best thing with ME/CFS because I'm reading Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic and what's become clear is this .. ME/CFS was first spotted and investigated in a wealthy area of the US where the population could afford all the tests there were, and the clinics had all the equipment they needed.
In the NHS, the treatment is basic. The Canadian Consensus lists (from memory) a full page of tests that they recommend are done, almost none of which have been in my partner's case. I'm guessing if we went private and had the money, we could pay for all those tests. But still, tests are one thing, a treatment or cure is another, and you can test all you like but unless there's something you can do about what you find, perhaps it's all in vain. So we sit and wait and we hope as hard as we can that the WPI makes further progress.
Now, we know the way science works. If I say I dropped an apple and it hit me on the foot so there must be this thing called gravity associated with large objects, it needs other scientists to also drop apples on their foot to prove that what I observed is consistently repeatable, and if so others devise other experiments where they, for instance, measure the time it takes for an apple and a lead ball of the same size to fall to the ground, then whizz off to the moon, and work out how long it takes there, then they work it all out to come up with a model or formula, then other scientists repeat exactly that to prove it works for them too and then they stretch the formula to try to find some way that it doesn't work, then they get all excited about that.
So, the WPI announced the link between XMRV and ME/CFS and other laboratories set about repeating it and guess what? Many found no link. "Ah", say the vested interests, "thank goodness, it was all a storm in a tea cup, the WPI were wrong, keep calm and carry on".
But what's this? At least one of the studies was by Wessely's team and frankly .. I'll be blunt, I know you can take it .. I can drive a double decker bus through Wessely's methodology. But hey, who am I? He's the big professor. Do politicians know about research methodology? Thatcher might have but otherwise, I think not. So they'll listen to Wessely and, his way's cheaper anyway so all's well.
I've not seen a refuting study that has anything close to the quality of the original WPI one.
Now .. perhaps the WPI institute had to come up with something fabulous in order to gain funds for further research. Maybe they sexed it up a little. Who really knows?
But here's what I do know.
ME/CFS doesn't tend to strike the faint hearted. Those afflicted are people who had passion in their hearts, determination, they worked hard, pushed themselves .. they were going somewhere, they were going to make a difference.
So when ME/CFS is cured, that will be a story, all those fabulous, capable, strong and fearless people back in circulation, realising their potential.
What's got me foxed, though, is how best to bring that day forward. Of course, I care for my partner in the medium term. I guess if the WPI come up with an effective treatment, that will shake things up, so we could help them with whatever, funding or expertise. If we can get Wessely out of his position that would be a start but I fear the system would create Wessely II.
There are 250,000 people with CFS here in the UK, that's 4 in every thousand people, so 27.5m worldwide assuming it's evenly spread. The capitalism model would say someone, somewhere will see that as a market need worth pursuing. I guess the WPI does. So that's the capitalist solution. But capitalism also gave us the Lightning Process which bows not to science, preferring to serve only the easily bemused, persuade them they're not ill, and then gag them if it still doesn't work, allegedly.
Out of interest, I liked the NHS and NICE. I'd have liked NICE to have funded research into cures for long term debilitating illnesses. Nationalised medical research. It would save on the incapacity benefit bill.
So there. I don't know what the solution is. All I have is hope at the moment, and right now, it's all vested in the WPI. I love them. But a very tiny part of me is braced to discover that they are not 'true' either.
If anyone's got a better idea than helping the WPI and hoping, do please let me know.
Meanwhile we're not in pain (many with fibromyalgia are in constant pain), and it's lovely to walk slowly and watch the spring buds.

































That's not to say results can't be achieved tomorrow, they can .. read on.
The first test that an SEO campaign goes through is the test of your keyphrases against market data. What you are looking for first of all is to discover all the search phrases people use when they want what you sell, and there may be thousands .. it's a basic error to think there are just a handful.
Each one of those then needs to be checked that there are sufficient quantities of people searching on it in your geographic market to make it worthwhile working on, that you have the resources to beat the strength of competition, that you really deserve a front page place in search for that phrase, and that others are making money on that phrase.
Out of that analysis come some hot keyphrase opportunities.
Next up is working out which page of your website you want to direct each of those keyphrases to: your landing pages.
The next question is whether you are going to be able to sell things to people searching on each of those keyphrases, so before you invest in a medium term SEO campaign, run a pay per click (PPC) advertising campaign on your first chosen keyphrase to your chosen landing page. PPC ads can be set up in minutes and be running easily within an hour. Ballpark, you need a conversion (sale) every 200 clicks or better. If you get sales, you are then into the dual game of optimising your ads to get a great quality score and click through rates so your clicks are much cheaper, and using that traffic to improve your landing page so it converts better. Remember, when you start, you'll be spending more on the ads than you are making and there's a process to go through which may or may not end in PPC profitability but will, at least, end up in a reasonably good landing page.
If you can prove you are selling using PPC, your landing page and your chosen keyphrase, you can then move into SEO with the aim of replacing your PPC with free traffic. In the meantime you can keep running your PPC campaign or switch it off as you wish.
Since you are still testing, you'll be doing SEO on a single keyphrase group, but you really need not to write just about a tightly controlled phrase or Google will find you out .. it has to look like you are writing around a particular topic. So you work on that to build your inbound links while watching the number of inbound links you have versus your main competitor to work out whether you are gaining on them or not with the current level of activity. If not, push the accelerator harder and run for another three months or so.
Once you have your SEO position for that phrase, hopefully you'll have been testing another one with PPC so you can put phrase one into a holding pattern and start pushing at phrase two.
If a keyphrase makes money, there will be competition for it. Money matters to people. This is not easy. But millions of people do it, and this is how. It just takes enough resource and some patience, but once you have three or four top ranking, money making keyphrases you have a business and once you are in position it's much easier to defend your new online business.
If you are a small company reading this with not much resource, it's the same process you just have to choose a smaller niche where the competition is not so strong.

. Testing, my friends (it works lower down so it's not a lacking capability of my browser).
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