Saturday, August 14, 2010

Stupidity alerts

A few years ago, I read about a cool way to keep abreast of medical advancements for ME/CFS: subscribe to Google Alerts. Here's how it works. You give the site a search query—in this case "chronic fatigue" treatment. The Google Alert will then automatically search for new results and e-mail them to you on a regular basis.

These days, my daily alert is useless as far as hard information goes. I generally learn about important developments from the ME community before Google does its thing. I've kept it running, though, for a couple of reasons. First, it's a pretty good way to keep tabs on how the media reports the disease. Second, if an article says something stupid, I can leave a comment to let other readers know why it's stupid.

from XKCD by Randall Munroe

Usually the article in question talks about how very useful cognitive behavioral therapy and graded exercise therapy are. (Both are promoted by psychiatrists who argue that ME/CFS is an "illness belief" rather than a real disease.) For instance, on Thursday I got an alert for an article—really an informercial—about how patients should use exercise bikes to help them get better.

I left the following comment:
Graded exercise therapy is a very bad idea for people with myalgic encephalomyelitis (aka “chronic fatigue syndrome”). ME patients start out with a limited amount of energy each day. They deplete that energy when they feed themselves, brush their teeth, or walk to the bathroom. Telling them to spend energy on something that doesn’t help them meet their basic needs — using an exercise bike, for instance — doesn’t make any sense.
I notice that at this writing, the powers that be haven't seen fit to make my comment public. Perhaps they're just really busy.

16 comments:

Joanne said...

Hi Cinderkeys I saw one of your writing gems on a forum recently Autism speaks?? about children with Autism and parents with MS diagnosis.

Although you and I come from different aspects my ME/CFS was found to be lyme Disease and I am nearly 100%, it is still the same old same old where medicine and doctors can't see what is under their noses and just do not listen to their patients.

phil watson said...

Hi Cinderkeys, my name is Phil Watson and I run an unusual treatment business called changing lives (www.changinglives-stives.co.uk).

I have been treating people with a unique magnetic field called Bioflow for nearly 12 years now. The scientist who figured out how Bioflow works is a cell biologist called Vladislav Vaclavek, or Vlad as we call him. His contention is that using this special magnetic field helps the body to balance the pH of blood and cells.

He wrote a book called 'Magnotherapy the pHacts' to explain what magnotherapy, especially Bioflow’s unique field, does to the pH of the body and why that is critical to cellular health.


With regard to 'energy' related conditions and problems in the body pH is extremely relevant. He explains in his book that all cells work within a very narrow range of pH. Outside of this range certain critical parts of the cell have problems. These are known as ion channels, or pumps as they are often known, and they start to work poorly or at worst fail.

These pumps literally control the health of the cells; all cells including plant cells have this issue. Therefore maintaining pump functioning is essential. Acupuncture has been shown to work on these pumps, however if the pH is too low acupuncture will not work, as the cells are trying to protect themselves by keeping acid out.

The pH of blood is balanced by many systems in the body, including minerals such as potassium and calcium as 2 examples. One of the main ways though is a process called 'buffering', and this is what he thinks Bioflow works on.

The body's energy production is directly related to pH, as these pumps allow for the inflow of oxygen and other 'ingredients' that cells need to do their jobs including making energy. An imbalance in pH, too low normally, would lead to massive energy production problems for cells and therefore the body.

What causes the drop in pH can be a combination of many factors including such things as dehydration, stress, pain (which causes stress), injuries, car crashes, viral infections and many other factors.

What these all do is lead to adrenalin production. This produces a mass of lactic acid, resulting in a drop in pH

The cell Biologist, Vlad, is sure that combining Bioflow with his correctly balanced electrolyte supplement would solve these issues. We have been following that idea in our treatment we have never failed to help a person with ME Chronic fatigue, Fibromyalgia, Polymyalgia or Lupus to get free of their condition.

We are so confident that, with some products and our help, the person will get a result if they follow the protocol we have set up, that we offer a 6 month money back guarantee if they don't.

Please check out the web site, and if you want to know more please feel free to get hold of me via the contact page on the site.

Kind regards

Phil Watson
CHANGING LIVES

cinderkeys said...

Joanne: Though ME and Lyme share a lot of symptoms, I believe there are important differences that a knowledgeable doctor should be able to detect. Lyme patients don't get post-exertional malaise, correct?

Phil Watson: I considered deleting your comment as spam, but in the spirit of the original post, I'll simply leave a comment of my own explaining why I can't take your claims seriously.

1. Patients with ME do whatever they can to find relief, including seeking alternative therapies. If a treatment that had been around for 12 years actually cured them, the news would have spread like wildfire among members of the ME community, and you wouldn't need to post informercial-comments on other people's blogs.

2. It's called "magnotherapy."

MOS said...

An infomercial was certainly what I thought of. They have NEVER FAILED to help a person with ME chronic fatigue, fibromyalgia, polymyalgia , or lupus GET FREE of their condition? This is an insult to the intelligence.

Joanne said...

Some Lyme patients do get post-exertional malaise but thankfully that was not one of my symptoms.

Sadly there are not many knowledgeable doctors about either of these illnesses and certainly not in our NHS.

phil watson said...

Dear MOS, I am sorry that you have an opinion of the products I use based upon your opinion rather than actual fact. I am also amazed that you make the statement "This is an insult to the intelligence." without finding out any of the actual science behind this product. If you want a free copy of the cell biologist’s book I will gladly send you one. Depending on your physiological knowledge depends on how much it will make sense.

But if you go to my web site on the FAQ page there is a list of answers to questions. If you look at the “Is there any science behind this bit, there is a brief explanation there. The cell biologist that wrote the book had some of his work studied by The Nobel Department of The Royal Swedish Academy of Science (The Nobel Prize) at one point. He works all around the world and is an incredibly qualified scientist, and it is his scientific knowledge, which saved his life, using this unique magnetic field. If doctors listened more to cell biologists and other eminent scientists we would all be better off health wise.

It matters not a bit to me if people ignore me or this information, they will unfortunately be the losers. But if people go on the web site they can see for themselves what some people have written about me and this treatment. Our customers are nearly always willing to speak to other people directly, once I have confirmed with them that they are willing to do so, I am sure they would gladly do so to you. The choice is entirely yours.

I have written to many ME, Fibromyalgia, Chronic Fatigue groups in the UK over the years offering their members a free sample treatment on any of their members, and not one of them has ever taken up my offer, which makes me wonder why. I have demonstrated for free on over 25,000 people since 1998. If my treatment didn’t show results why would they buy any products at all? Also I offer a 6 month money back guarantee, and you would be amazed how few people have returned them over the years.

I am absolutely confident of the results possible, and as soon as people take a proper look at what can be done the better. The only reason I have decided to put my info on blogs and look for people I can help is because I know I can help them. What people do about that is up to them, but some of the people I have helped are so grateful they found me. Check out the testimonials on the site for yourself. One of them is a BBC radio presenter and ex-member of the pop group Wham, Janey Lee Grace. Janey wrote about us in two books, which you can also get if you want. The first was Imperfectly Natural Woman, ISBN 190442489-9

Kind regards

Phil Watson

phil watson said...

Dear Cinder keys, I appreciate the fact that you didn’t delete as spam, as I also respect your opinion, but unfortunately as I often find, the facts do not come out as you think they do. There are many known and proven cures for many diseases which have been scientifically proven by very eminent scientists, which are not recommended or even discussed by some doctors.

Dr Linus Pauling and his patented treatment for heart disease for example, he won 2 Noble prizes and they still aren’t listening to his science even now. Even though he was voted in the British Journal of Science as one of the most important scientists that ever lived. However I am going to take his supplement for the rest of my life, even though it costs me money. http://www.saveyourheart.com/productspage_heartdiseasesupplements.html

My customers have many questions when they are lucky enough to find me. The most common one is, “Why doesn’t my doctor tell me about this therapy?” The second is “How come I have never heard of this before?” We always find these difficult to answer. The other interesting thing regarding my customers is when they go back to where they live and absolutely rave about the results they have had.

They go along to their ME, Fibromyalgia, Polymyalgia, CFS, etc, etc, etc, group raving about the obvious results that they have got, and the people can see for themselves right in front of them just how great they are. These people can never understand why other people don’t just ring me up at the very least for a chat. Instead what they do is stay in the world they are in and my customers go off and get their lives back together, scratching their heads as to why other people don’t believe them.

If you really want to know how to solve it then just check out my site. I offer everyone the same option in the UK. If they can get to me I will treat them for free, as I have done for nearly 12 years now. If they can’t get to me than they have some choices. They can ignore me, do nothing, check me out, check out my web site, contact some of my customers, purchase some products with a cast iron money back guarantee for 6 months. The worst of these is to do nothing.

Also on my site, www.changinglives-stives.co.uk, on the contacts page, is an e-newsletter request form for other natural remedies and sites such as the Linus Pauling one above. If people put in their email address, I will send them many others, though they might be surprised at what is out there.

I also offer you a free copy of the cell biologist’s book and you can read for yourself what he says. As with MOS, all I need is an address to send it to.

Kind regards

Phil Watson
CHANGING LIVES

phil watson said...

Dear Cinder keys, I almost forgot, I was confused about the second comment about it being called Magnotherapy? As that is what I called it, hence the title of the book 'Magnotherapy the pHacts' ISBN 0 9535970 0 8, if you want to search for it.

Kind regards

Phil Watson
CHANGING LIVES

Laurel said...

The irony of Phil's comments are almost amusing. Almost. :)

By the way, I've tried Magnet Therapy. I've also balanced my pH and electrolytes. I'm still horribly sick. Must be that pesky XMRV retrovirus.

Jeff Shattuck said...

Susan,

Have you looked into hyperbaric oxygen therapy (HBOT) at all? I tried it for my brain injury and it has helped... some. Sadly, it's very expensive and not covered by most insurance plans, but there is a logic to it: cells need O2 to be healthy and by using pressurized O2 you can ram more of it into your cells! Also, the woman who runs the facility I used has Lyme disease and she swears that HBOT has changed her life. In fact, she quit her job as a nurse and opened her HBOT center after finding the treatment to be so helpful. Happy to point you to additional info if you're interested.

Jeff

Kyle Bennett said...

"The cell biologist that wrote the book had some of his work studied by The Nobel Department...."

LOL, Phil. Then my uncle Buford must be on the verge of a breakthrough in criminal science, because he has had some of his work studied by the psychology departments of several major law enforcement agencies and has been employed for 25 years at one of the top universities in the world.

Of course, he's employed as a janitor and his work was studied after he was involuntarily committed for running naked through the mall yelling "I'm the King of Quasiland and I grant you all knighthood!" while waving his.... er... scepter at people.

DeppityBob said...

Phil, all you've done is argue by assertion. Unless you have links and cites to peer-reviewed work describing this "cure" in positive terms, you're just a snake-oil salesman and a spammer. People hurting as much as ME/CFS sufferers deserve better than to have their wallets cleaned out by an amateur con man.

Three Chord Monty said...

Well, this sounds promising. Treats "ME Chronic Fatigue," you say? (I can hear Wessely & Reeves' clapping hands) Well, surely your author whose work has been studied by the Nobel panel understands the necessity to demonstrate efficacy via clinical trials. I don't see any references on the site, so either I missed something, or the people behind the treatment did.

Beyond that, I see a mention of 'fatigue syndrome,' but little that demonstrates that the people offering this know anything about the conditions whose names they are mangling, whether knowingly or not.

This is great if you're dealing with people who don't know that the symptoms of ME/CFS range beyond those known to overlap with other conditions. If someone believes that ME/CFS is all about fatigue & a few other oft-repeated, fairly common symptoms, this is perhaps understandable. Unless, of course, they're claiming they can offer successful treatment.

If they're helping people, that's great. If they can't demonstrate that they even know what ME/CFS actually is, rather than the popular perception of it, I'll wait for the results of clinical trials before I choose to spend money on a treatment that ALL of the people who actually do know about this disease have mysteriously remained ignorant of.

cinderkeys said...

You guys are awesome. Just sayin'. :)

Kyle Bennett said...

"You guys are awesome. "

Hey, I had no choice. Somebody was wrong on the internet.

phil watson said...

Well I will leave you all to your beliefs and knowledge, whether it is right or wrong. I will just carry on fixing people. I wish you all well. As ever the sceptics will sit in their own little world without actually getting anywhere, such a shame but hey ho. Lol Phil

ps remember the name though, Vladislav Vaclavek.