Fibromyalgia

Manuka Honey – The Bees Knees?

Manuka honey has been recommended by an extended family member with Diagnosed M.E. as I have been bought two jars and a skin cream its probably worth me trying it out. I will be taking about 5ml of 12+TA “ManukaPharm” Manuka Honey a day while not changing medication within my review period. For information my other medication is Amitryptilyne 50mg/day, Duloxetine 60mg/day, Vitamin D 25mcg, Testosterone (gel) 50mg/day, Oramorph average 75mg/day, Buprenorphine 10mcg/hr & Topical Dovobet when required for Psorasis.

My family member has cited a reduction in pain and fatigue after taking Manuka honey so I’m going to see if there is any noticeable difference in my condition. My attitude towards it is sceptical with a small dose of hope, obviously this is hardly a scientific test but it will be interesting to see. My family member is going on a cruise soon that he believes he would have never attempted without the benefits the honey has brought to him. Most people with M.E./CFS/Fibromyalgia will say they would try anything to get some relief and I am no different. After doing some research this is what I have found:

About the honey itself

Manuka honey is mainly produced in New Zealand where Bee’s only collect pollen from the indigenous Manuka bush (Leptospermum Scoparium) in controlled environments. Since it has become popular Manuka is now being grown in other countries including the UK. The honey being sold as medically beneficial is referred to as being “active” in that it contains active enzymes that continue to react chemically within the Honey. This is measured in laboratory tests and is called the UMF (Unique Manuka Factor) or TA (Total Activity).i was surprised to learn that the honey is licensed by the NHS in the UK for the treatment of MRSA for cancer patients since 2004. In 2010, the scientific steering committee of the US National Cancer Institute approved a proposal for the use of manuka honey for the reduction of inflammation of the oesophagus associated with chemotherapy.

Obviously they honey is cited as beneficial in a number of other areas by alternative health practitioners, these areas include treatment of bacterial infection, treatment of inflammation, would healing, high cholesterol, diabetes, cancer, a variety of ENT (Ear Nose & Throat) problems, eczema, acne, gastrointestinal problems and even reduction of plaque in the mouth. Research on these areas is not as detailed but some evidence is out there. Components of the honey include Hydrogen Peroxide which has an antibiotic quality, Methylglyoxal (MG) which is antibacterial and comes from the conversion of another compound – dihydroxyacetone – that is found in high concentration in the nectar of manuka flowers. Researchers into the effects of honey on bacteria have observed changes in the lengths of bacterial cells, cells bursting open, and changes in the appearance of the DNA inside the cells which could of course bring benefits to the patient. Honey can also benefit the skin because its effect of Osmosis which can alter hydration in cells themselves bringing particular benefit to skin when changes in moisture levels of skin cells can be so important.

A word of warning however, through my research I have come across various scams in relation to Manuka Honey. In some cases cheap honey is being sold as Manuka Honey when it isn’t. In others Manuka Honey has been cooked or heated to produce a high UMF rating so watch out for high ratings too.

I will report back my findings after taking Manuka Honey over a period of time to see if it has any noticeable effect. I will also be testing a Manuka Honey Skin Cream on Psoriasis that I will discuss in a separate article. Has anyone tried Manuka Honey hoping for health benefits? What were your experiences? I would really like to hear your comments that can be left under any article or page, just remember to check for the confirmation email or your comments will not be authorised.

Further Reading

“‘Bug busting’ properties of honey assessed” on the NHS choices website published March 18 2013
The Effect of New Zealand Kanuka, Manuka and Clover Honeys on Bacterial Growth Dynamics and Cellular Morphology Varies According to the Species” on PLoS ONE Published online February 13 2013
Manuka honey is the bees knees” on the independent.co.uk published online May 26 2009
Manuka Honey on the webmd.com website
Stung by fraudsters: How cheap honey is being sold as ‘liquid gold’ manuka variety at £45 a jar” on the Daily Mail website published August 25th 2013
Manuka Honey Ratings Explained” on the greenbayharvest.co.uk website
Harnessing honey’s healing power” on the BBC News website published online June 8th 2004


Why is it important for us to know what causes Fibromyalgia?

Why I decided to write this article

I would like to explain to people why I think the question “What causes Fibromyalgia?” is such an important one to ask. I also feel it is very hard for people who do not have Fibromyalgia to understand why this question is so important to people with Fibromyalgia. I would also like to think this article could help bridge those gaps and help Fibromyalgia patients to explain why this question is so important to them.

Background

This is a question I have been considering for some time, on and off. Today I had a conversation with a Fibromyalgia patient in her twenties who I could really identify with, as I was also diagnosed with Fibromyalgia in my twenties. This conversation got me thinking about the question again, why is it important for us to know what causes Fibromyalgia?

As you can probably imagine, the answer isn’t straightforward, there is no one “all encompassing” reason but rather a number of, no less legitimate, reasons.

Human Nature

It is in our very nature to be curious, no matter what you believe about the creation of human kind you soon realise that our curiosity is very important to us, humans. I also do not believe this is entirely accidental, yes some more than others need to find the answers to everything, but rarely do you come across a person who has never asked the question “why?” in their lifetime. I am, by nature, an analytical thinker. In psychology this element is often measured alongside other characteristics to analyse our personalities. It is not simply a question of “are you a thinker or not?” But rather where are you along the scale: Do you think a little? Do you think a lot? The very fact this element is on a scale rather than a simple, yes, or no, shows us we all have this element in our personality and is part of what we consider to be human nature.

So why is it an important part of Human Nature?

As humans we have had a very successful dominance on our planet, we can often be considered to be at the top of the food chain, or at the least threat of extinction. No matter what you believe about our creation, selection or evolution we are sure to agree that as humans we are survivors. I don’t want to lose people here thinking this is a post about psychology but it won’t be the only time I refer to psychology in this article.

As survivors we need to recognise patterns, quite simply, if I do A it harms me, if I do B it benefits me. We are programmed to recognise this and to B not A. This very basic concept has ensured our survival as a species so far. When it comes to our health it is very important to know what is good for us and what is bad for us, as the potential penalty is so high. It is only recently that we have developed medicine and we are starting to leave the more complex analysis of health issues to a group of people we hold in high regard, doctors. For most of our time on the planet however this analysis has been very individual and how well be think, could be a matter of life or death. Quite simply we are programmed to try and work out what is healthy and what is unhealthy. That way we can make an informed choice about what we do, if the penalty health wise is low, we might do it a little but if the penalty is high then you will probably find we don’t do it a lot, if at all.

As this is hard wired into human nature we are unsettled if we don’t know what causes something. Fibromyalgia as a concept is very difficult to work out. Sometimes if we walk 1km we feel fine, sometimes if we walk 10 metres we become ill. Naturally we want to understand this to be in the best of health so we can live happy and fulfilled lives, without undue concern about our health. Unfortunately Fibromyalgia is very complicated indeed. But we are programmed to want to understand it.

To understand something we need to gain knowledge about a given subject. When it comes to health “what causes” something is a huge part of this knowledge. In the history of humanity, our very survival has been based on solving “what causes X?”, what causes the plague, cancer, AIDS? We have also learnt that we can only prevent things happening after we have understood what makes them happen in the first place. Our medical understanding of Fibromyalgia/CFS/ME is very limited indeed, not just as individuals but as a species. At the moment we can not treat Fibromyalgia with much success and we can not cure Fibromyalgia at all! This is the first reason why “understanding what causes Fibromyalgia?” is so important.

Our Private information

Fortunately Fibromyalgia does not appear to be contagious, but other than that we don’t really know that much about it. Yet we can all agree that having Fibromyalgia is detrimental and not having Fibromyalgia is beneficial. Therefore it is important for us to know we can not give it to others. Throughout history medical conditions have either been contagious or non contagious. The way a condition is passed to another person has become very “socially” important to us because often it says something about our actions or our life choices. Disease can be passed through being “unhygienic” or “unclean”, it can be passed through our genies and it can be seen a “defect” or the ultimate social taboo is passing something through sexual contact. This sexual contact can also, on occasion reveal our sexual preferences, sexual boundaries and even who we may have had sexual contact with.

So here “what causes” a health condition can say so much about us socially, it can reveal our lack of personal hygiene, our genetic differences or how or who we have has sex with. These or often considered very private matters, so it is important for us to understand what causes a health condition so we understand if it reveals something about us we would rather keep private. We are also aware that these statements about us are not always accurate, sometimes our understanding of transition type has been wrong, however it can not simply be corrected as these things have developed into social stigma, social prejudice and social stereotypes. For example during the AIDS epidemic initially some people believed you could only catch it through homosexual practices, so if you had AIDS then you have obviously had homosexual sex? That was the belief for quite sometime and remains a social stigma today even though we know AIDS develops from HIV, which can be contracted through sexual contact with ANY sex, through blood products/transfer and possibly poor hygiene in medical procedures (needle sharing etc). So if we have a condition where its cause is unknown, what could it say about our private lives in future? No matter how accurate they may be. This is one reason why we want to know what Fibromyalgia says about us.

What it says about our lifestyle and our choices to others

We have also learnt that having a health condition can say so much about us beyond the things that we like to keep socially private. Our medical understanding has been a recent revolution and for the first time in history generations of people now know certain lifestyles or certain choices can cause health conditions or make them worse. For example we know being overweight increases our chance of diabetes, smoking increases our chance of cancers and heart disease. We also understand that people who are physically fitter, generally have better overall health and suffer less medical complaints that those who are unfit. So what does Fibromyalgia say about us? The fact is we don’t yet know, it is unknown, we have clues but no concrete answers. Could our choices prevent Fibromyalgia or not? Does it mean we are more likely to lead an unhealthy lifestyle, make poor choices, or be lazy people? We do not actually know. As times goes by we “slowly” have more information but we are years, if not generations away from any definitive answers.

Can other people get Fibromyalgia because I have it?

This isn’t quite the question “Can someone catch it from me?” But it encompasses it. As mentioned earlier we look at any condition and categorise it, for example. Is it viral? is it bacterial? is it fungal? Is it genetic? Is it because of my personality or lifestyle? Am I sure I can not pass it on to anyone?

At first glance we know most of the answers are “no” but can we actually be sure:

Looking at all the different theories out there makes you wonder. Often the onset of Fibromyalgia is linked to a severe illness like the Flu, so does it somehow ride in with a virus or bacterium? Often theories involve an undiscovered transmission from plants or animals like Lyme disease, so could I have caught it from a person? An animal? A plant? At a specific place? Often theories cite a genetic weakness so did I get it from my parents? Did I have a genetic weakness that activated because I did something or caught something? Often theories cite a psychological cycle so do I have a psychological problem?

All of these questions have implications, their answers could mean that we could either pass Fibromyalgia on or help stop Fibromyalgia developing in others if we knew the answer. If we (people with Fibromyalgia) found out for certain we could do something to reduce the risk of others getting Fibromyalgia I’m almost certain most people would make that their number one priority in life. Especially if “others” were your children, your partner, your family, your friends or your neighbours. While most indications point to us not being able to take evasive action we are still going to think about it. The implications are just so large for it not to be a concern to some of us. We know this condition well and for most of us it has a severe impact on our lives and everything we do, so its only natural to try and stop others experiencing the same.

I have often heard the phrase “I wouldn’t wish this on my enemy” used in discussions between Fibromyalgia patients and I think it is a very telling phrase when it comes to considering what we would do if we could stop people from getting the condition.

How to manage our condition

We have also learnt as a species that certain conditions can be controlled better than others. However we also realise that this knowledge is often gained after we learn what causes the condition in the first place. Due to the fact we don’t understand what causes Fibromyalgia we don’t have definitive answers about what makes it worse and what makes it better. We know that while the cause remains unknown the best we can hope for is collective trial and error. We rely on others with our condition finding ways to ease it and we rely on them telling everyone else too. Yet we know as Fibromyalgia patients, what works for others does not always work for us, but how can we understand why this is without first understanding what causes Fibromyalgia in the first place?

How It makes us vulnerable

As a species we have also learnt that were there are questions, there are opportunities. We know that generally one person in 7 billion is likely to know “the answer” (What causes Fibromyalgia?) first. Then from that they share this knowledge, this carries on, until we know the answer as well. We know at some point the answer will probably be found so we need to remain open but how do we know when the answer in genuine or not? How do we, with limited medical knowledge, test and verify any persons claim to know “the answer.” As we have this question some people could take advantage of this opportunity to deceive.

We understand that “the answer” could be the key that unlocks to door to a normal life, but so do others, perhaps they know how desperate we need “the answer” or what we would do to get “the answer.” This is when we realise we are vulnerable, we know that scams, fraud and deception are rife among human kind, we have all been a victim of deception or know a victim of deception so we see that victims become victims because they desire “something” and “someone” can take advantage of that.

Victims of scams often only need to desire something little to get caught out and we know this. Often people are conned out of a few pounds due to a slight desire to make a few pounds. However we also understand we could be conned out of our life savings if we desire something strongly enough. So we actually realise how vulnerable we are, as patients with Fibromyalgia we know we would probably give a limb, or a huge sum of money to know “What causes Fibromyalgia?” and we understand this makes us very vulnerable indeed. However this quickly becomes a “catch 22” situation because if we knew “What causes Fibromyalgia” we would suddenly become far less vulnerable and susceptible to the scams. Some of us may know Fibromyalgia patients who have been conned out of cash over the Internet for the “Big Fibromyalgia cure in a tablet” only for them to find it didn’t help in the slightest.

We understand that our desires make us vulnerable, that the strength of our desires can determine what we are prepared to lose and that our desire to understand what causes Fibromyalgia is huge, making us very vulnerable indeed.

What does Fibromyalgia say to us about our choices?

We have discussed about what Fibromyalgia could reveal to others about our choices but what could they reveal to us?

We know that stress can make Fibromyalgia worse, so did we make choices that were too much stress for us to handle?
Did we choose a job or career that was too stressful?
Did we have a relationship with someone that put us under too much stress?
Did these things make it worse or could they have caused it in the first place?

These are questions we often ask ourselves. It is a natural part of reflection and we have discussed how thinking and curiosity is programmed into us and how sometimes is can really benefit us. However all of the little questions all come down to one big question; What causes Fibromyalgia?

It is no surprise to find most of us review our choices in the past and ask what if? The simple fact is no one knows. It does not make the question any less important however we should appreciate that there are an infinite amount of “what if’s” we can ask during out lifetime. One day I would like to know the answer and I really hope I do. It would be interesting to know if I could have avoided some of the pain I have been through and it could really benefit my decision making in the future if I knew the answer.

Does asking the question “What causes Fibromyalgia?” actually cause Fibromyalgia or make it worse?

Before you say “What? No,” just humour me for a second. Most of the people I know with Fibromyalgia are the “curious”, “analytical” types. Heck I wouldn’t be writing articles in the early hours of the morning if I didn’t think about Fibromyalgia all the time and have such a drive to want to help others with it. Perhaps these elements of our characters or personalities exasperate our condition?

On an assessment for a pain management course I was asked about what I do to try and help my condition. My answer involved a little bit about my lifestyle but also a lot about what I do to research the condition, help others with the condition and push for answers about the condition. This took a very long time to explain but at the end of it I was told that I needed to learn to let go of these things and accept I have Fibromyalgia, that I always will have the condition and that it will remain a mystery to me otherwise all my efforts would continue to make my condition worse. This is the first time I had been confronted by the opinion that continually looking for the answers actually makes the condition worse and perhaps causes it in the first place. This took place quite some time ago and after a great deal of consideration I dismissed this theory as incorrect. However to balance this article a little I decided to mention it as this theory is held by a lot of the medical profession and does have some interesting elements to it. I certainly agree that at times our frustration with our search for answers can manifest into physical health problems or perhaps make some symptoms worse. As such I have eased off the gas pedal a little when it comes to research as I acknowledged senses of frustration which can again cause physical problems. I also wanted to mention it as you may come up against this view when you explain why the question “What causes Fibromyalgia” is so important to you to others.

Conclusion

I believe we are hard wired as humans to ask “What causes Fibromyalgia?” and the more we are effected by Fibromyalgia the more we will want to ask the question. I do not think its something to be ashamed of by any means and in fact is demonstrates we want to learn to better ourselves, to lead happier and healthier lives. Throughout history this mechanism has contributed to our success as a species on the planet and I personally believe trying to avoid the question would go against what it is to be human. For patients an answer could unlock the doors to so many possibilities and I think we all need to push a little for the question to be answered. I also hope I have managed to explain to people without Fibromyalgia why the question is so important to us and why it has a multitude of implications for us, our friends and families.

The voice of reason

I have tried to objectively explain why this question “could” be very important to those with Fibromyalgia and why most other questions actually boil down to this one question after analysis. I have also discussed some of the potential implications of the question remaining unanswered and thus some of the potential implications of the question being answered in the future. However a lot of these implications are very unlikely and although we can not rule these possibilities out completely I should point out the chances and probabilities to put them in perspective. If you remain considered and vigilant you are unlikely to be a victim of deception for example. Also although we don’t know what causes Fibromyalgia the chances of you passing it on to others are remote and if it is genetic you probably could not do anything to limit the chance of it being passed on anyway. In the future there is likely to be far more knowledge about the condition, its causes and how to treat it as history has demonstrated to us about illness in the past. If any of this article causes you significant concern you should discuss it with a medical professional who is far better placed and far more knowledgable about medicine than I am. Things need to be put in perspective and not taken out of context, these are just some of the things that could concern patients and there may be many more I have missed, but its unlikely for a patient to be concerned about them all for most of the time. However if you feel you are concerned about the majority of issues raised most of the time you may really benefit from a medical perspective and various talking therapies available to help you cope with your concerns.

I also encourage comments and would love to see people’s opinions under this article, have I missed anything? Did you find it useful or not? What are your more significant concerns? Etc etc.


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


Famous People with Fibromyalgia

Introduction

As you may know i have been fairly bad recently, I have had a lot going on and my Fibromyalgia and other problems mean my health is quite unstable at the moment. I have wanted to write an easy, quick, blog post for some time but haven’t been able too. After waking sometime after 3pm its now 5pm and I might be on the ball enough to write a quick post.

Inspiration

Browsing through twitter I saw a tweet from @chronicpaindad giving a link to an about.com article “Why I Hope Morgan Freeman Becomes a Fibromyalgia Spokesman” and I realised I did not even know Morgan Freeman had Fibromyalgia. So I started a little browsing and found a few other famous faces with Fibromyalgia (Don’t worry I don’t know half of them either)

Morgan Freeman

Probably the most famous of “Hollywood” actors with Fibromyalgia. It looks like he had a fairly serious car accident where he needed to be cutting out of the vehicle and, as with a lot of Fibromyalgia patients attributes the onset of his Fibromyalgia to this physical trauma. In his case he also had surgery to repair nerve damage in his left hand which is interesting for the theorists of Fibromyalgia being a condition where nerves are damaged or malfunction in some way. Morgan Freeman still has various problems with the use of his left hand and has referred to it as being, at times, “useless”. Obviously this is quite a severe problem in itself besides Fibromyalgia and he sometimes has to have is hand under compression to stop blood “pooling” in his hand.

Wikipedia Entry

With this news I also had a little look round the Internet to find out who else we may recognise with the condition.

Sinead O’Conner

This Grammy-winning Irish singer-songwriter never shied away from controversy throughout her career. Named one of People magazine’s “50 Most Beautiful People in the World” in 1991. O’Connor achieved worldwide success in 1990 with a cover of Prince’s song “Nothing Compares 2 U”. She also announced her retirement from music in 2003 due to the severe pain and fatigue caused by her fibromyalgia, however, since then she has returned to music.

Wikipedia Entry

Susan Flannery

This four-time Emmy-winning actress played the ruthless and family-driven Stephanie Forrester on the daytime soap The Bold and the Beautiful since 1987. In 2007, Susan made news headlines after she asked the show for medical leave, in an attempt to treat her ongoing battle with fibromyalgia. Although Susan has returned to her role as the monarchy of the Forrester family. She still struggles with her fibromyalgia, but she reportedly takes her condition day by day.

Wikipedia Entry

Rosie Hamlin

Lead singer of the ’60s band Rosie and the Originals, Rosie became one of the greatest singers of her era, topping the favorites list of fellow musicians like John Lennon. In 2004, Hamlin appeared on the cover of Fibromyalgia Aware magazine where she discussed her struggle to overcome debilitating pain while touring, as a result of fibromyalgia. Although her love of singing will never die, she’s given up touring and headed down another career path as a painter or rather a “Pathpainter”.

Wikipedia Entry

Michael James Hastings

Although I cant find him on IMDB or Wikipedia you are supposed to know him as Captain Mike from the TV series “The West Wing,” but he has also worked as a church counselor for three years and as a public school teacher for 10 years. At the age of 30, Hastings was diagnosed with fibromyalgia which eventually forced him into early retirement. Michael became a national spokesperson for the disorder, and promotes the Enzymatic Therapy line of vitamin supplements, which claim to help reduce certain symptoms of fibromyalgia. Mike promoted their supplements by touring health food stores throughout Los Angeles, and providing customers with information. He is now reported to be undertaking a PhD in Educational Technology.

Frances Winfield Bremer

Wife of Ambassador L. Paul Bremer III, Frances has struggled with fibromyalgia for over 30 years and she’s now the official spokesperson for the disorder. Like Rosie Hamlin she also been featured on the cover of Fibromyalgia Aware Magazine for promoting awareness of the disorder and passing on motivation to those that also suffer. She and her husband have made numerous joint appearances to speak about the disorder and let people know that it’s a serious condition. They’ve also raised money for various fibromyalgia organisations.

Wikipedia Entry

Florence Nightingale

Here is a controversial one to round off. Florence Nightingale was a pioneer in health during the Victorian period. She also wrote about health conditions and dietary information based on notes about patients she’d treated during her time in the Ottoman Empire. Her first book, published in 1858, was called Notes on Matters Affecting the Health, Efficiency and Hospital Administration of the British Army. Her fibromyalgia was triggered by an infection, and she was finally bedridden in 1896. After years of struggling with this disorder, she died in her sleep at the age of 90.

Wikipedia Entry

Further Reading

Well, its taken be nearly 24 hours and it was supposed to be a quick post, but there we go. If your at all interested in reading more here are some of the websites I used to write the article. “Why I Hope Morgan Freeman Becomes a Fibromyalgia Spokesman” By Adrienne Dellwo on About.com, Article by Kelly Green on Green Celebrity Network, “Celebrities With Fibromyalgia” Written by Brandon Fowler on healthline.com, “Faces of Famous People with Fibromyalgia” by Emily on Inspired Living with Fibromyalgia, “Famous fibromyalgia people: from Job to the Bold and Beautiful” on fibromyalgia-information-relief.com, “Celebrities with Fibromyalgia” on Jennifer’s Fibro Story.


Test your Vitamin D for £25 at home

As the title suggest you can now get your Vitamin D levels tested privately for £25 and you can do it at home then send it off by post for the results.

Background

I have been inundated with comments in response to my article “Vitamin D Deficiency” posted on the 21st of May and have heard from a lot about people with low Vitamin D levels and have even been sent research suggesting a link to Fibromyalgia. Within these comments someone informed me of a Vitamin D test available in the USA and I asked if there was one available for people in the UK. I would like to credit Charlene Sphon for the link she sent me for a Vitamin D test in the UK so we have her to thank for this great bit of information. In my original post I said that many people in the UK could be suffering from low Vitamin D levels due to a long dark winter and this could effect those with and without Fibromyalgia. Since then it seems like most people with Fibromyalgia that have been tested have come out low, so it is certainly something worth looking into.

Symptoms of Low Vitamin D

To recap the symptoms of low Vitamin D are:

Fatigue
General muscle pain and weakness
Muscle cramps
Joint pain
Chronic pain
Weight gain
High blood pressure
Restless sleep
Poor concentration
Headaches

However there is no clear pattern of symptoms and some people remain symptom free despite low levels. It can also be hard to distinguish between the symptoms of low levels of Vitamin D and Fibromyalgia.

The £25 Test

About the test

The test is offered by the Pathology Department at City Hospital in Birmingham which is part of the Sandwell and West Birmingham Hospitals NHS Trust. They will send you the kit with instructions by first class post and then you return it to them in a prepaid envelope. They then use liquid chromatography mass spectrometry method to measure the Vitamin D in your blood. This will measure both Vitamin D2 and D3 levels (also known as the 25-hydroxy test) and they will provide a clear interpretation of the results all of with your D2 and D3 levels. The results are sent to the email address provided on the consent form. But if you would prefer they we can post results to you. The results are expressed as nmol/L which are the older units still used in the US and some laboratories in the UK, however you can covert them to ng/mL with the help of their Q&A Page on their website. The test is a “blood spot” test where you prick your finger and place a spot of blood onto a sheet which acts a bit like Blotting Paper and you put four drops of the sheet. They aim to process results in 5 days.

How to buy

To buy you need to ring them on 01215074278 and pay over the telephone by debit or credit card. The cost of the kit and service is £25 and for organisations that order 10 or more they offer a discount of £5 (£20 per test). You can order from overseas for £30 a test to be sent by airmail.

Alternatives

If you have a reason for believing you have low Vitamin D levels your GP can conduct a blood test on the NHS at no cost so the £25 test is for added convenience of home testing and using the postal service. If you are due routine blood test your GP could arrange to test your Vitamin D levels at the same time.

If you have low Vitamin D

If you your test comes back as low you could increase your bodies exposure to sunlight as it is your body’s main form of collecting Vitamin D. Otherwise you can take Vitamin D supplements but speak to your doctor or Pharmacist before doing so. Too much Vitamin D can be harmful too.

Buying Vitamin D Supplements

Sometimes your GP may prescribe you supplements but you can also buy them in pharmacies and Health Food Shops. You can also buy them over the Internet and for more information visit Vitamin D in our Helpful Products section which has links you can follow to purchase them from a reliable retailer.

Click here to be taken to the Vitamin D test for £25 website


Vitamin D Deficiency

I thought I would write a post about Vitamin D deficiency as it seems to be a subject on the lips of quite a few at the moment and I have also added various Vitamins & Minerals to the Helpful Products section of the website.

Firstly I would like to mention Vitamin D without Fibromyalgia or particularly without a diagnosis as I think this offers a valuable insight into why it seems to be such a talking point. A few months ago a friend came to me to ask some advice about his health. He is one of those people who works all the hours god sends (in retail) but never seems to take a sick day. However on this occasion he was feeling out of character, fatigued and rather down. I went through the usual questions to probe his situation more and assess signs of stress, anxiety and depression. It became obvious that there was nothing “situational” in his life to cause these feelings and this led me onto considering chemical factors. I had a little think about my situation and his which on the face of it are very different, more like seeing what superman has in common with someone in a coma! I realised that he has spend the last six months literally in the dark, as had I, for different reasons and one of my problems was low Vitamin D. His lifestyle involves getting to work in the dark, coming home in the dark and spending all day indoors. As we had worked out his problem probably wasn’t situational but more chemical Vitamin D seemed a good starting point so I advised him to speak to his GP. A couple of hectic weeks passed until I spoke to him again but I was pleased to hear he had been to the doctors, his doctor has said the same as me, the doctors opinion was low Vitamin D and he prescribed a Supplement. He has taken these for a week or so and felt much better.

This got me thinking as at the time I was preparing to write an article about Hay Fever and I was explaining experts belief this year is going to be a really bad year for people with the condition. The reason was because of our particular long, cold and dark winter that we have just had in the UK. Now we get out Vitamin D from sunlight so perhaps this could be responsible for more than just a Hay Fever epidemic (if you will), but may be causing low Vitamin D in people more than a typical “seasonal variance.” This got me researching the problem and discovered journalists from the Mirror had been talking about the same subject in this article on their website.

Blood tests showed that I had low Vitamin D last summer and I had read up on the problem and how similar some symptoms were to Fibromyalgia but also how more likely people with Fibromyalgia were to have low Vitamin D. Depending on the severity of Fibromyalgia it the individual patient may determine how much it effects your mobility. Some patients diagnosed with Fibromyalgia are lucky to be able to hold down jobs but some of us, myself included are not so fortunate. I’ve hardly seen the sun in six months as I spend 95% of my time in bed and my best times are generally in the middle of the night. Some people with Fibromyalgia are very much the same. To prove my point about how similar the symptoms are here are some symptoms of low Vitamin D listed on one website:

There is no clear pattern of symptoms
People remain asymptomatic despite low levels
Fatigue
General muscle pain and weakness
Muscle cramps
Joint pain
Chronic pain
Weight gain
High blood pressure
Restless sleep
Poor concentration
Headaches
Bladder problems
Constipation or diarrhea

To me, that looks like a very similar list to the symptoms I associate with Fibromyalgia!

I think the best thing I can do is promote awareness of low Vitamin D, its symptoms, its relationship with Fibromyalgia and its relationship with the UK 2012/2013 winter. It may be worth discussing with your doctor especially if your symptoms have worsened over winter or if you are on a path towards a Fibromyalgia diagnosis. If your scheduled for any Blood Tests it may be worth asking for a Vitamin D level if its not already on the list.

To put things in perspective supplementation is sufficient for most and if you have low Vitamin D levels make sure you get tested after being on supplements a while to ensure its working and their isn’t a different reason behind the levels that may get missed. It is also worth mentioning that Vitamin D goes hand in hand with Calcium, basically Vitamin D helps the body to absorb Calcium so keep an eye on the relationship between the two on blood tests. If you have low levels of both and think it may be more than a lack of sunshine then read up on Hyperparathyroidism (Parathyroid Disease) but obviously try and keep things in perspective and discuss things with your GP. The long term risks of low Vitamin D include an increased risk of cancers (various studies show) so as it can be solved fairly easily it might be worth your while.

Too much

I would always speak to a Doctor or Pharmacist before taking any supplements. But certainly if your taking more than 1,000 IU. It is important to be monitored while taking supplementation so what your body is absorbing can be monitored and toxicity prevented. You can’t get too much from sunlight only but you can get too much taking it by mouth, as it is fat soluble the body has a hard time getting rid of it if you do take to much. Problems are toxicity, stripping calcium from your bones, kidney problems, stones and increased risk of cardio vascular disease.

“Very high levels of 25(OH)D can develop if you: take more than 10,000 IU/day (but not equal to) everyday for 3 months or more. However, vitamin D toxicity is more likely to develop if you take 40,000 IU/day everyday for 3 months or more.” – http://www.vitamindcouncil.org/about-vitamin-d/am-i-getting-too-much-vitamin-d/

“Taking 50,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity. This level is many times higher than the recommended dietary allowance (RDA) for most adults of 600 IU of vitamin D a day.” – http://www.mayoclinic.com/health/vitamin-d-toxicity/AN02008

Where to buy

Our Vitamins & Minerals (Suppliments) section within our Helpful products section has more information on Vitamin D and Calcium in general as well as some good places to buy supplements from.

Further Reading

Symptoms & Diseases Associated With Vitamin D Deficiency on drfranklipman.com
Vitamin D Deficiency on webmd.com


Benefits Paperwork Overloading Claimants

20130507-225518.jpg

The paperwork for benefits claims is overloading claimants who have to prove they have limited capabilities for work and work related activity yet, are expected to manage a huge amount of paperwork.

The picture above is the file containing paperwork for one Employment & Support Allowance Claimant, next to it is a standard pack of 500 sheets of A4 paper for a direct comparison. Her claim started in July 2010 but this claimant feels she has yet to be placed in the correct category for ESA. She has not received any benefit for a year because of the 365 day rule for Contributory Based ESA, as she was placed in the Work Related Activity Group. By 365 days a claim should be resolved but instead it has taken nearly 3 years so far.

Despite her not being paid any benefit for a year, the responsibility to prove she isn’t capable to work is on her, despite her condition. This puts her in a real catch 22 situation as she is not capable to manage her case, but she has to do her case to prove she is incapable. When it comes to Tribunals claimants are not automatically entitled to help and many have to rely on charities and organisations like the Citizens Advice Bureaux who are being swamped by the volume of people needing their help. This has led to them joining other charities and publishing a report entitled simply “Not Working” about how the benefit simply does not work and overloads anyone going through it.

It all rests on the claimants responsibility to collect their own evidence, but if they are too unwell to do this and too unwell to approach these charities they often find themselves not being able to cope with the demands the state places on them. ATOS Healthcare are notorious in the British press and they hold the contract to conduct the Workplace Capability Assessment on claimants. However their notoriety comes from a high volume of clients appealing their assessments as ATOS has found they do not have limited capabilities. Often this decision is then overruled at appeal or tribunal if the claimant (who is incapable of work) puts a strong enough case together.

It is a huge problem for claimants when ATOS deem them capable as they then have to gather and often commission there own medical reports in an attempt to show ATOS are wrong and they are in fact incapable of work. This gives them a huge workload and overloads the charities that might be helping them. Today we have heard the volume of requests is also overwhelming GP’s according to BMA Scotland in this BBC Article. But the responsibility for all of this rests with the claimant who are drowned in paperwork, desperate for written evidence from GP’s , Specialists and Healthcare Professionals. As said previously the claimants often have to commission these reports themselves, it is their responsibility. This can cost hundreds of pounds while cases go on for three years despite not being paid any benefit.

Often ESA claimants also have to apply for other benefits like Disability Allowance, Housing Benefit & Council Tax relief. With benefit reform sweeping through these areas claimants are often left with huge files, like the one shown in the picture, for each benefit they apply for. I would certainly agree with CAB when they say “Not Working” as its not working for anyone and the system is simply flawed.


My Fibromyalgia is a pain in the…….. Legs!

Do you have problems with leg pain? If so, your not alone and I thought I would write a little piece about leg pain as there seems to be quite a lot of chatter on the forums about it at the moment and isn’t something that people instantly link with Fibromyalgia.

Firstly there are many different pain syndromes that effect people with conditions like Fibromyalgia and in you can it is worth trying to classify your pain so you can target you efforts onto trying to solve that particular problem. Two of the common types are Neuropathic Pain & Myofascial Pain and I have had both. I will try and post more information on pain classification soon as you can normally take an educated guess at the syndrome that effects you by the “feel” of the pain, the “location” of the pain, the way the pain “starts” and the way the pain “stops”

I recently posted a reply to the topic of leg pain in the UK Fibromyalgia Forum and you can view my specific reply to the users question here.

My leg pain

I used to have very painful legs almost all the time during the first few years after diagnosis. It felt like there was massive air pressure on my legs like it was crushing them. The pain was more dull than sharp and was like a really bad ache.

My relief

I was prescribed Duloxetine by my Rheumatologist as part of trying to find something that will give me some relief from my pain so it was not prescribed for my leg pain specifically and I had no indication that it would work in that way, which is quite important when considering the placebo effect. Duloxetine is a drug that is in the UK Rheumatologists hypothetical “toolbox” when it comes to treating Fibromyalgia, just like Amitriptyline, Pregabalin & Gabapentin.

As soon as I started taking them my leg pain stopped overnight. Due to a communication problem between my specialist and my GP I was placed on 20mg a day rather than the 60mg a day my Rheumatologist wanted me to be on. A few weeks later I went up to 60mg a day and I had high hopes it would help with other pain upon a dosage increase. Unfortunately this was not the case and I did not notice a significant change in my pain levels anywhere other than my legs. However to this day I always ask to keep Duloxetine on my medication plan due to it solving my leg pain most of the time. It is important to say at this point I do still have a day or so every few months where I do have leg pain but I would consider Duloxetine in my case to be over 90% effective in relieving my leg pain.

More about Duloxetine

When it comes to dosages you can start at 20mg a day and go to 60mg and my Specialist Pharmacist wants me to go higher. It’s an off licence use of the drug but you can still get it if prescribed by a Specialist treating you for Fibromyalgia. Just be aware that its mainly used to help stress incontinence in older women, so when I first got mine my pharmacist gave me a funny look and asked me to go into the consultation room, the following conversation was very very funny and we laughed about the whole thing quite a bit (although he is a great guy) and he prescribed them to me without a problem.

It is also worth mentioning that Duloxetine is also used in the treatment of Myofacial pain in Diabetes patients as well and this may indicate why it can help people with Fibromyalgia. I also suffer from some mild circulation issues, cold hands and feet etc, and of course this can be a complication with Diabetes. Of course this is something I have realised however I have not medical training so take it with a pinch of salt.

Other drugs

You can often take Duloxetine with other drugs for Fibromyalgia. For example you can take Amitriptyline with it too. It is worth mentioning here that these types of drugs work on the Seratonin levels within the body and effect the bodies re uptake of it. Therefore there may be a theoretical risk of Seratonin Syndrome with combinations of these drugs so bear this in mind and consider asking the specialist/pharmacist about it if your being prescribed combinations of these drugs or other SSRI’s.

Also they may suggest stepping your Amitriptyline up to 75mg/day and some specialists may use higher dosages of both these drugs however I think its 75mg max in the BNF for Amitriptyline and 60mg/day for Duloxetine.

Other remedies

The only other thing I find that helped was a warm bath, afterwards I used to put long johns or a long tubiegrip bandage on them (just one layer) to help keep them warm. I certainly notice a firm link between the legs getting cold and the levels of pain they give me. Try and keep your legs warm but remember if your wearing things like long johns all the time heating up genital areas a lot can cause further problems for both males and females when it comes to UTI’s and things like thrush.

Other suggestions in forums are: Bamboo Tea, Kalms (herbal) tablets, a BioMat, TENS machines, electric blankets, hot water bottles, foot spas and even as bizarre as it sounds, and no I have not tried it, a bar of soap under the covers in bed!

Important reminder

It is important to discuss any changes in treatment with you doctor first. They know about your health and what could be perfectly harmless to one person could be lethal for others. This goes for medications (which should only be prescribed by doctors), home remedies and especially over the counter, herbal or complimentary medicine. A lot of people think you can take any herbal medication alongside prescribed medication safely. This is explicitly not the case. This article is based on experiences and suggestions from non medically qualified people so you must always discuss them with your doctor first before trying ANY of the suggestions in this article.


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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