Research

Dr Lipkin finds more evidence and believes that “the primary cause of CFS/ME is likely to be an infectious agent”

I have come across an interesting article from Phoenix Rising about Dr Ian Lipkin who has been talking about the first results from the world’s largest ever biomedical ME/CFS study. Dr Ian Lipkin is a physician-scientist and Professor of Epidemiology at both the Mailman School of Public Health, and the College of Physicians and Surgeons at Columbia University. He is also the Director of the Center for Infection and Immunity.

The study is looking for any pathogen (viral, bacterial, fungal or parasitic) to see if a chronic infection could explain ME/CFS. So far there is no clear sign of viruses but they have found strong evidence for immune overstimulation, both in blood plasma and in cerebro spinal fluid. They are now working hard to try and identify what could be causing these abnormalities.

As most people know Fibromyalgia is very similar to CFS/ME and some in the medical community believe they are the same thing. There is also evidence to suggest people diagnosed with one of these conditions may find their symptoms fit the definition of the other condition more closely. This does not particularly help in our understanding of the conditions and some patients liken the onset of the condition to “catching a virus” or claim that the condition started after a severe viral infection similar to Influenza (Flu).

Dr Ian Lipkin does (thankfully) seem to be looking into these possibilities and has been for some time. In 1999 he published his first paper on CFS and also made comments that would re-assure most patients with the condition. He said that: “there was a very strong sentiment in some portions of the scientific and clinical communities – not always and not everywhere – but in some portions of the community, that this was a psychological illness. What I said was that based on our findings we had very strong evidence that people with Chronic Fatigue Syndrome were truly ill with a physical illness and they deserved a “Deep Dive” to find out why they were ill.” More recently he has said that: “I still believe the primary cause is likely to be an infectious agent.”

I know many people will welcome such research and we all hope for more research and discoveries when it comes to Fibromyalgia/ME/CFS so we can all be believed, but more importantly, get some relief.

The Original Article on Pheonix Rising


Vet Develops Fibromyalgia Blood Test?

Yes there is a reason why there is a Question Mark within the title, Blood Tests for Fibromyalgia have form! (See “Fibromyalgia Blood Test, The Bigger Picture” on 19th April 2003 & “Blood Test for Fibromyalgia Available?” on 12th March 2003)

Here a Vet claims to have developed a blood test that can detect a “fingerprint” caused by Fibromyalgia. It is totally different to the method used in the commercial test by EpicGenetics, Inc. in the USA too. There are a few important highlights that stand out for me. Firstly, is a test group size of only 14 Fibromyalgia Patients, 15 patients with rheumatoid arthritis, and 12 with osteoarthritis. They claim it was 100% accurate on that group, but that is no where near the scale of testing that would deem this as a breakthrough. I don’t know if the advent of social media brings these stories into the public domain far sooner than in the past, but I can’t help but thinking stories like these are very premature. From this group you can quickly see that there was no control that eliminated the variables of Fibromyalgia or Arthritis. This means the test, at present, has no diagnostic value. All this test has achieved is to correctly categorise Arthritis against Fibromyalgia in a group of 41 people where each has either condition. This of course can be done already with different blood tests and potentially with just a physical examination (by an experienced Rheumatologist to detect inflammation in joints and similar problems.) In fact the blood test could just as easily be detecting arthritis instead of Fibromyalgia.

The Vet behind this is Professor Tony Buffington, (DVM, MS, PhD Diplomate ACVN) of Ohio State University and I first saw the articleBlood Test Could Lead to Early Diagnosis of Fibromyalgia” published on the 24th July 2013 on the National Pain Report.com Website.

At this stage I would not even refer to this as either “interesting” or “promising” and I would be very disappointed to see this test being offered commercially any time soon. It seems there is much commercial interest in developing a diagnostic test for Fibromyalgia however we do not seem to be gaining any understanding about the condition or the science behind it. I feel without a leap in our understanding about Fibromyalgia any diagnostic test will just be measuring a coincidence at best and does not show an advance for patients in any way. We already have a diagnostic criteria widely accepted for Fibromyalgia and I would rather see progress in understanding or treatment first.

Links

Professor Tony Buffington, (DVM, MS, PhD Diplomate ACVN) of Ohio State University
“Blood Test Could Lead to Early Diagnosis of Fibromyalgia” published on the 24th July 2013 on the National Pain Report.com Website

Previous Articles on myfibromyalgia.co.uk

Fibromyalgia Blood Test, The Bigger Picture” on 19th April 2003
Blood Test for Fibromyalgia Available? on 12th March 2003)


Researchers found a hidden sensory system in the skin, now it solves the mystery of Fibromyalgia?

I have been wanting to write about this for some time and a recent study going round the Fibromyalgia circles has prompted me to write as the evidence that this sensory system is behind Fibromyalgia mounts up.

Background

For me this story takes me back to 2009 that was just two years after I was diagnosed with the Fibromyalgia which took away my still young career in the Police. At the time I was doing some quite heavy research into Fibromyalgia, as many of you reading this would have done also. Its not a great journey, you find glimmers of hope that turn into dead ends and all you really learn is nobody really has clue about what is different about Fibromyalgia patients. However is this about to change?

Back in 2009 I got quite excited about some research from Albany Medical College which seemed very promising, I remained quite sceptical, but, the story seems to have carried on and an update has come to light in Journal of Pain Medicine. It also came to me from a strange place, and from someone whom I have a great respect for. It was actually Derren Brown, or rather his blog post back in December 2009 called “RESEARCHERS FINDS HIDDEN SENSORY SYSTEM IN THE SKIN“. I will simply say he is an excellent psychologist and true, honest, showman. But without further delay I will tell you about the research itself.

The Research pre 2009

The research team discovered a hidden sensory system by studying two unique patients who were diagnosed with a previously unknown abnormality by the lead author David Bowsher, M.D., (Honorary Senior Research Fellow at the University of Liverpool’s Pain Research Institute.) These patients had a congenital insensitivity to pain, meaning that they were born with very little ability to feel pain. Although this is fairly rare a lot of people have heard about the condition as in more extreme cases sufferers can regularly cause themselves injury just because they can feel no pain. Now some people, especially those with Fibromyalgia may instinctively want to trade places with these individuals but think about this, how many times have you burned things by accident or left something on your stove too long while cooking? Well imagine this object was a limb, or a hand, the first thing you notice may be a burning smell? Well think about that smell for a moment and imagine finding you had left your hand on a running gas ring by accident! This is the true horror of the condition where “accidents” like this happen regularly of these individuals who lack the feeling behind that instinctive movement of yanking your hand out of the way when you burn it.

Leaving the the slightly morbid descriptions behind, doesn’t this sound like the complete opposite to Fibromyalgia? It did to me, so when I found out about the research I quickly found a respect for the logic. I mean: if you learn more about individuals with a condition which is totally opposite on a spectrum, then surely there is a chance you will stumble on something which explains why you are at the other end?

The strange thing with these two individuals were that conventional tests revealed that the skin sensations of this individuals was severely impaired, including their response to different temperatures and mechanical contact. But these individuals also had adequate sensation for daily living and could tell what was warm and cold, what is touching them and what was rough and smooth. So if conventional tests showed severe impairment, what system was actually working for them in practice that was giving them some sensation? The mystery deepened when skin biopsies were analysed and skin from these individuals showed that the normal nerve endings that give people these sensations were not present in the samples, so what was producing a feeling in individuals who lacked the nerve endings associated with our sense of touch?

The answer appeared to be in the presence of sensory nerve endings on the small blood vessels and sweat glands embedded in the skin. “For many years, my colleagues and I have detected different types of nerve endings on tiny blood vessels and sweat glands, which we assumed were simply regulating blood flow and sweating. We didn’t think they could contribute to conscious sensation. However, while all the other sensory endings were missing in this unusual skin, the blood vessels and sweat glands still had the normal types of nerve endings. Apparently, these unique individuals are able to ‘feel things’ through these remaining nerve endings,” said Dr. Rice. “What we learned from these unusual individuals is that there’s another level of sensory feedback that can give us conscious tactile information. Problems with these nerve endings may contribute to mysterious pain conditions such as migraine headaches and fibromyalgia, the sources of which are still unknown, making them very difficult to treat.

The Research post 2009

This was what was revealed back in 2009 about two patients without Fibromyalgia. However the same researchers seem to have carried on their research by working with Fibromyalgia patients. They have now presented again in a medical Journal in 2013. Since this 2009 report they have taken skin samples from the hands of Fibromyalgia patients and were surprised to find an extremely excessive amount this particular type of nerve fibre (called arteriole-venule (AV) shunts.) Now they’ve discovered that there is a direct link between these nerves and the widespread body pain that Fibromyalgia sufferers feel. In the hand these nerve fibres play a role in regulating body temperature, opening to permit blood to bypass capillaries and save heat and causing the hands to get cold. Under cold conditions, the shunts become especially active, perhaps a reason why the cold bothers fibromyalgia patients so much. The pathology the scientists discovered among the AV shunts and the resulting alteration of blood flow could also be the source of achiness, muscle pain, poor sleep, and cognitive issues linked to the disorder.

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Dr Rice was one of the researches that used unique microscopic technology to study the small skin biopsies and Dr Rice seems to have developed a possible hypothesis about Fibromyalgia. “In addition to involvement in temperature regulation, an enormous proportion of our blood flow normally goes to our hands and feet. Far more than is needed for their metabolism. As such, the hands and the feet act as a reservoir from which blood flow can be diverted to other tissues of the body, such as muscles when we begin to exercise. Therefore, the pathology discovered among these shunts in the hands could be interfering with blood flow to the muscles throughout the body. This mismanaged blood flow could be the source of muscular pain and achiness, and the sense of fatigue which are thought to be due to a build-up of lactic acid and low levels of inflammation fibromyalgia patients. This, in turn, could contribute to the hyperactvity in the brain.”

My Thoughts

It certainly looks like this research is actually quite promising and it certainly seems to have quite a bit of research behind it, in contrast to other “discoveries” that have been revealed on my website like “The Fibromyalgia Blood Test.” Now this research isn’t purely academic and the interests of companies and in particular Drug Companies are present,although it makes me a little sceptical it is quite common. The hope is that the drugs companies involved may be able to develop a future medication that can act on this particular nerve fibres and either reduce the intensity of the signals they send to the brain for pain perception or reduce their sensitivity all together in order to balance blood flow and temperature control in Fibromyalgia patients. In this case it is probably positive news to hear that the research has been funded by two drug companies who may have an interest in developing this medication in the future. While anything practical for Fibromyalgia patients is a long way in the future it could be a potential breakthrough in the understanding of the mechanisms behind the condition which has not really progressed for decades. At the moment most medications that are used are simply designed work on our current understanding of general pain perception rather than any understanding of the condition at all, so at this point it seems to be positive news.

I also think this could “possibly” be involved in the problems I have with blood tests as it could explain the pain and my bodies shock reaction.

Who exactly is behind this research?

Trying to work out who is involved often takes a lot of time and a lot of research but to present a rounded view I do try to dig out what I can. Most of the research seems to have taken place in the USA, however in this instance the two patients who were used to originally start the research seem to be patients of David Bowsher, M.D., (Honorary Senior Research Fellow at the University of Liverpool) and joint founder of The Pain Research Institute, a division of Neurological Science at the University of Liverpool, UK. This institute is also connected with a charity called “The Pain Relief Foundation” which was established as a registered charity in 1979, in response to the need for specialised research into the causes and treatment of chronic pain in humans.

The research was published by a renowned “Albany Medical Center” neurologist and pain specialist Dr. Charles E. Argoff who was the studies primary investigator. His collaborators were Dr. James Wymer also at “Albany Medical College” and Dr. James Storey of “Upstate Clinical Research Associates” in Albany, NY, USA. The skin biopsy tests were conducted by “Integrated Tissue Dynamics LLC (Intidyn)” which is a small biotechnology research company, founded by neuroscientists Dr. Frank L. Rice and Dr. Phillip J. Albrecht.

The clinical research proposals were funded by “Forest Laboratories” and “Eli Lilly” which are both pharmaceutical companies who have previously developed FDA-approved medications with similar functions (Serotonin/Norepinephrine Reuptake Inhibitors, SNRI) that provide at least some degree of relief for many fibromyalgia patients.

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Articles and websites I used to write this post

Blog Post by Derren Brown (December 2009) called “RESEARCHERS FINDS HIDDEN SENSORY SYSTEM IN THE SKIN
“Researchers finds hidden sensory system in the skin” on PHYS.org
“Absence of pain with hyperhidrosis: A new syndrome where vascular afferents may mediate cutaneous sensation” on painjournalonline.com (Journal of the International Association for the study of Pain) published online 16 October 2009
“Fibromyalgia Mystery Finally Solved!” written by Rebecca Savastio on The Guardian Express (online) published on 20th June 2013
“Rational Biological Source Of Pain Found In The Skin Of Patients With Fibromyalgia” on Medical News Today (online) published on 19th June 2013
“Doctors Confirm Fibromyalgia Is Not Imaginary” on redorbit.com written by Lee Rannals on 18th June 2013
“Researchers Find Possible Biological Basis for Fibromyalgia” on Yahoo News (online) written by Vonda J. Sines on 19th June 2013
“Researchers find hidden sensory system in the skin” on Integrated Tissue Dynamics Website
The Pain Relief Foundation (UK) website
The Pain Research Institute (UK), a division of Neurological Science at the University of Liverpool, UK website
Integrated Tissue Dynamics LLC (Intidyn) website
Albany Medical Center (USA) website
Forest Laboratories (USA) website
Eli Lilly (USA) website


Fibromyalgia Blood Test, The Bigger Picture

On 11th March I posted about there being a Blood Test available in the USA that claims to diagnose Fibromyalgia. I hope that one of the things that came across in that post was my level of “healthy scepticism” and although I am not medically qualified I could see a few warning signs that the Blood Test might not be all it claims to be. Since I have been able to research this story more (as I am sure many of you have done) I soon found evidence that backed up my scepticism.

The background to this story first appeared in a study titled “Unique immunologic patterns in fibromyalgia” published on BMC Clinical Pathology (A publisher of peer-reviewed Science, Technology and Medicine journals) website by Dr. Bruce Gillis. The study claimed that “the cytokine responses to mitogenic activators of PBMC isolated from patients with FM were significantly lower than those of healthy individuals, implying that cell-mediated immunity is impaired in FM patients. This novel cytokine assay reveals unique and valuable immunologic traits, which, when combined with clinical patterns, can offer a diagnostic methodology in FM.”

So it appears the study suggests that “cytokine” levels could be tested and that this test could offer a method of diagnosing Fibromyalgia. Following this many people expected that this could kick start research into “cytokine” and that it may offer a glimmer of hope for Fibromyalgia patients in years to come. But what happened only a few months later was that a company called EpicGenetics in the United States started to offer a commercially available Diagnostic blood test for Fibromyalgia. The test was called the FM/a® test for a fee of $744.

Now going back it appears as though the author of the Study published by BMC Dr. Bruce Gillis is also the founder of the company EpicGenetics according to this article entitled Questions arise over new diagnostic test for fibromyalgia by Fox News and also shown on a company biography here. So here we have a potential commercial motive here for this study and diagnostic test although it is worth saying that this is common practice and isn’t in itself evidence of something more sinister. This said a diagnostic test for Fibromyalgia could be very profitable for a company given the fact diagnosis is currently one of exclusion in that a patient presenting with symptoms will receive various tests for other medical problems and when they all come back negative a diagnosis of Fibromyalgia is then considered. Also patients diagnosed with Fibromyalgia quickly learn that some people do not believe in the condition itself and with a lack of physically visible symptoms they find their condition hard to prove to anyone, friends, family, employers and even medical professionals alike. So it is no surprise to find that in the first month EpicGenetics took three quarters of a million dollars ($750,000) in payment for tests in their first month giving the lab approximately 1,000 tests to process.

One of the most vocal criticisms comes from Professor Fred Wolfe (Director of National Databank for Rheumatic Disease in the USA) in his blog post entitled “Junk Science – Junk Ethics.” He states that “Cytokine levels are abnormal in many physical and mental conditions” and concludes in saying “that they (EpicGenetics and Dr. Gillis) were trying to fool people into buying the scientifically unproven $744 test.” This criticism has been quoted in several articles written on the Internet and quite frankly plenty of criticism is available if you start looking into the test online. That said people rarely research these things and often assume that if a medical company offers a test it must have had all the appropriate testing needed and that it is backed up with sound medical science.

So it appears as though this test might not be as great as it appears to be. It seems to have come about from a single medical study conducted by the people profiting from the money the test makes and there are many questions about it that remain unanswered. The study fails to address some rather big issues like;

What other conditions display the same result?
What exactly is the mechanism behind these cytokine levels?
As test patients had a diagnosis of Fibromyalgia for over a year how do cytokine levels change in early and late stage patients?
How many independent Studdies should there before a diagnostic test is marketed?
Is there anyone responsible for regulating this area of medicine and diagnostic tests offered by companies to the public?

So I’m afraid it isn’t all its cracked up to be. Personally I would advise against the $744 fee for a very questionable diagnosis and before you do, consult your doctor or specialist first. It is hard to believe a diagnostic test can be offered as a result of a study performed on 201 patients funded by the company payment for a test goes to. It reminds me of the small print on television shampoo adverts when they say “90%” of people loved this shampoo but on the bottom of the screen in very small writing you read “out of 10 people asked.” But the shocking thing is the Shampoo industry may be better regulated.

For a list of articles click here. To get any comments authorised email development@[this web address without www.] in an attempt to reduce spam comments and emails.


Blood Test for Fibromyalgia available?

A blood test for Fibromyalgia is offered as a service by a company called EpicGenetics, Inc. in the USA.

It is important to note that this has only just been passed onto me and I need to start doing some checks to verify the claims.

The test Fibromyalgia test the company offers is called “FM/a®” and they claim it is the first test available that can diagnose Fibromyalgia. The results are available in a week or less from their laboratory, so they claim, and a simple blood test is all that is required. The company offer the test for $744 USD and also state this could be fully or partially covered by some medical insurance providers to people within the USA. It is unclear at this point in time if this service can be offered globally but I hope to bring you this news along with some background and clinical opinions by UK specialists

The company state that fibromyalgia is a real medical condition and that the test is a multi-biomarker-based test which concerns immune system white blood chemokine and cytokine patterns. They say that Patients with Fibromyalgia have a significantly dysregulated pattern when it comes to these proteins.

Test results are based upon a 1-100 scoring system, with fibromyalgia patients having scores of 50 and above. They claim their test is more than 93% “sensitive” and state this sensitivity is comparable to the blood test for HIV. They also claim that the blood test for rheumatoid arthritis is only 65% “sensitive” for comparison purposes.

This news could be very important to those with Fibromyalgia, their family, their friends and indeed the medical profession. Anyone that has been diagnosed with Fibromyalgia for some time will be able to tell you that it is often not taken seriously by doctors and some dismiss the condition to be psychological and even that it is just a new condition for the hypochondriac to claim they have. However this has been disputed by nearly everyone diagnosed with the condition and there are even examples of doctors with Fibromyalgia and quite a few of them are published on the matter. Whatever this test proves to be I hope to bring you news and opinion as the story develops. With that in mind please email us at development @myfibromyalgia.co.uk if you have any information or would like to contribute to this story, just take the space out before the @ sign as it helps keep spam to a minimum.

Last but not least here is the link for the FM/a® Test


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