Our friends Jayne Linney & Debbie Sayers have appeared in an article on The Mirror website

Our friends Jayne Linney and Debbie Sayers have appeared in an article on The Mirror website entitled: “The number is finally up for ‘cruel and incompetent’ Iain Duncan Smith”. I have personally supported their campaign through this website, on Facebook & Twitter and am delighted to hear they have got some more national press coverage after their extraordinary achievement of reaching over 100,000 signatures on their e-petition to parliament. Debbie Sayers also wrote her own article on this website giving some background on the petition, herself and Jayne and their quest for accountability. (see all articles written by Debbie Sayers)

The Mirror article is well worth a read and will provide you with the latest update on this long running story. It also features a picture of Debbie & Jayne so regular readers can now put faces to names as well. I’m not going to cover the latest instalment in detail as its all in the article but needless to say I am anxious to see IDS in front of a select committee answering questions on the subject. I do feel there is a complete lack of accountability when it comes to our politicians and often the only opportunity the public get to act is in the form of a general election every four years. It is also staggering to think it takes over 100,000 people to hold an MP to account for his misuse of statistics and even then its far from guaranteed.


Jayne Linney: Blog Twitter
Debbie Sayers: Blog Twitter
The article on The Mirror website entitled: “The number is finally up for ‘cruel and incompetent’ Iain Duncan Smith” published 20the November 2013

Background articles about this story on our website

Fighting Iain Duncan Smith and Our Stats Campaign published 27th August 2013
Iain Duncan Smith not appearing before Work and Pensions Select Committee on 4th September to answer questions about his use of statistics to make political points published 27th July 2013
Successful E-Petition on benefits heads to parliament published 19th July 2013

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 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.


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 Website

Previous Articles on

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

Fighting Iain Duncan Smith and Our Stats Campaign

It seems lately that every day another minister for the DWP has something disastrous to say about claimants. The whole scroungers rhetoric took on a new slant in the beginning months of this year with statistics like, 71% of DLA recipients on life time awards left to languish un checked and 8,000 move in to work because of the benefit cap. These sorts of figures, of which there are numerous, are hard enough to swallow at the best of times, and these are far from the best of times. For disability campaigners it is hard to almost daily, see stats we know cannot be true, banded about like the crock of gold at the end of the welfare reform rainbow.

This is how our campaign started really, we were both on Facebook both bemoaning yet another press release from Esther McVey that announced another appalling stat that both Jayne and I knew to be nonsense; I said “someone should right an open letter to that woman”, Jayne replied “are you up for it” and I think my reply was, “what me!’” and it went from there. We drafted an Open Letter to Esther McVey the Minister for Disabled People and put it up on line asking people to sign it; over the space of a month or so, 866 people signed the letter and left comments, some angry, some supportive of what we where trying to do, and some harrowing stories of Work Capability Assessments and hardship brought about by the so called reforms.

Whilst we were promoting the open letter and collecting signatures Jayne approached about setting up a petition. It had been decided early on to send a copy of the open letter to the Work and Pensions Select Committee, including any comments along with the list of signatories, asking them to investigate the misuse of statistics by the DWP. We sent a copy of the letter and signatures to Dame Anne Begg the chair of the select committee, and continued to update her as the open letter grew. So it made sense to address the petition to the same Work and Pensions Select Committee, given their particular interest in the open letter and pages of comments. They W&PSC are responsible for monitoring how changes in policy and laws, effect people on the ground and can investigate when things go astray; they can also investigate MPs behaviour.

We launched our petition and waited to see what would happen, not really expecting very much and we were pleasantly surprised when it started to climb quite quickly. In the mean time we had closed the open letter and sent both a hard copy (by special delivery) and an email copy to Esther McVey, and several other politicians. We had discovered after launching our letter that many other people were trying to get some action to stop the DWP ministers misusing stats; from other disability groups, through to MPs and even members of the select committee, so it seemed our letter and petition were timely.

We sat back and waited for a reply from Esther McVey…….. None came….. But…. The petition with had succeeded spectacularly; currently standing at 100,593, it has also been mentioned in several national newspapers including the Guardian and the Newstatesman.

After a month or so we decided we needed to nudge the DWP regarding a response to the open letter, and so we wrote a second letter asking for such a reply; this was both emailed and hand delivered to Esther McVey’s office by a fellow campaigner. This time we didn’t wait and we drafted a template letter for supporters to send to their MPs asking them to find out why the open letter had been ignored. This got us an official reply very quickly, but it didn’t answer any of our original points and was very dismissive; we forwarded this to Ann Begg who did not seem amused, nor were we.

A few days later we were contacted by Anne Begg to inform us that…

“we will be questioning the Secretary of State himself on the use of Statistics as part of his evidence session on the Department’s Annual Report which will be at 9.30 am on Wednesday 4th September.”

Unfortunately the wheels of parliament run slowly and a couple of weeks later we received another email…

“Just to let you know that we are having to postpone our evidence session with the Secretary of State as the DWP won’t have published its Annual Report until after the House returns in October. As the Sept session was to include both the finances of the dept as well as its use of statistics, it is better that we have the information from the Annual Report before quizzing IDS.”

I don’t yet have a date for the session but will let you know once I know.’

So this is where we are now; we have in the pipeline another letter to Esther McVey demanding a proper and considered reply from her and not a sectary, and we have October to look forward to. We also hope to be handing our petition in to Liz Kendel MP outside the Houses of Parliament, where she will then submit it to the floor of the House of Commons. We are trying to arrange this as close to the date we get from the W&PSC, for the meeting with Iain Duncan Smith, as possible; adding the voice of over a hundred thousand people to those MPs and campaign groups that have also called for the committee to investigate.

In the mean time we intend to keep collecting signatures and evidence of the misuses of stats by MPs and Ministers and continue to try to get a reply from the disabilities minister.

Jayne and I had met some time before all this, on facebook and twitter and we are mutual members of many FB disability campaign groups; we have both in the last few years become increasingly involved in various campaigns and campaign groups. Jayne describes herself as a fifty(ish), disabled woman (including Fibro) who worked full time for over thirty years as a community activist, adult tutor & counsellor whilst also raising her, now adult children; until her health degenerated to a point her GP compelled her to leave employment 4 years ago. Since then she’s been fighting the system to claim contribution based ESA & DLA she’s had 4 ATOS assessments and has been through 3 reconsiderations, where she had to persuade DWP decision makers, that her Dr & consultants are actually correct and 2 tribunals (both successful). The trauma of these experiences alongside battling with officers at her Local Authority for Housing/Council Tax benefit on each occasion has made her very cynical about the rationale behind all of the ‘Welfare Reform’ cuts. She is also a carer for her partner who also has a chronic long-term condition.

As for myself I am a 48 yr old mum with Fibromyalgia diagnosed 17 yrs ago, I have a six yr old with SPD, and I’m a carer for my partner who has bone cancer and MSSA bone infection.
I get DLA and I have a job. I’m a community education art lecturer, I work with people with mental health problems, and I also have my own business that I’m struggling to keep a float with no help, because I don’t meet the DWP’s minimum income floor for the work programme.

I got involved with the We are Spartacus Network a couple of months after I had my own ESA assessment; which was a month before I was due to go self employed (what a waste of money that was), I was found ‘Fit for Work” no big surprise, even considering I am still ill. I am also a co founder of Disability Matters UK a disabled person led disability organisation.

I have watched my students and sick and disabled friends fall foul of the ESA process; people who ARE genuinely sick and disabled being left with next to nothing to live on and living in fear of the PIP assessments to come. And I have watched these same people as they bang their heads against a wall this government has created, a wall fashioned out of spin and misinformation to discredit all claimants of DLA, so they appear to be fakers, even though the fraud rate of DLA is a tiny 0.5%. The reality of these people’s lives is so much worse than most can imagine.

Iain Duncan Smith in his capacity as Minister for the DWP and the 4 junior ministers under his authority since the coalition was formed, have all persistently misused statistics and rhetoric to justify the changes to Social Security.

We feel it is important that ministers do not misuse statistics to push forward with controversial policies – Ministers have:
A) Duty to Parliament to account, and be held to account, for the policies, decisions and actions of their departments and agencies,
B) N/A
C) It is of paramount importance that Ministers give accurate and truthful information to Parliament, correcting any inadvertent error at the earliest opportunity. Ministers who knowingly mislead Parliament will be expected to offer their resignation to the Prime Minister,
D) Ministers should be as open as possible with Parliament and the public, refusing to provide information only when disclosure would not be in the public interest, which should be decided in accordance with the relevant statutes and the Freedom of Information Act 2000 Ministerial Code

It is important ministers take responsibility not only themselves but also for their ministerial team’s actions and this is why we wrote the Open Letter to Esther MCVey and started the Petition to ask the Work and Pensions Select committee to investigate.

Since writing this we have had a second hand reply via Michael Meacher MP who received a reply from Ester McVey in reply to his query about us having not had an adequate reply it is long winded and basically doesn’t answer anything … We will be following it up…

Thanks for spending time and spoons to read this I know its long Phew!
Jayne and Debbie

Groups we are involved with…
WOW Petition
We Are Spartacus Network
Disability Community UK Facebook Group
Disability Matters UK (Blog)
Disability Matters Facebook Page
UK Fibro Facebook Group
Cornwall Fibro Facebook Group
Talk about Fibro/ CFS/ ME Only Facebook Group
Cancer support for Partners and Carers Facebook Group

Our Blogs
Jayne Linney
Debbie Sayers Ramblings of a Fibro Fogged Mind

Background articles about this story on our website

Iain Duncan Smith not appearing before Work and Pensions Select Committee on 4th September to answer questions about his use of statistics to make political points published 27th July 2013
Successful E-Petition on benefits heads to parliament published 19th July 2013

A couple of articles that caught my eye

Iain Duncan Smith not appearing before Work and Pensions Select Committee on 4th September to answer questions about his use of statistics to make political points

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.


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.


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.


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
“Absence of pain with hyperhidrosis: A new syndrome where vascular afferents may mediate cutaneous sensation” on (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 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

DWP issue conflicting advice as everyone is swamped with benefits paperwork

Benefits Paperwork Overloading Claimants

Free Sample of Natural Sleeping Tablets


Free “Natural” Sleeping Tablet Sample

Asphalia (Asphalia Food Products Ltd) are offering free samples of natural sleeping tablets through their website here. This website has no affiliation with Asphalia and we get no money or advantage for referring customers to their website for samples. Quite simply I noticed this deal being spoken about in consumer forums and as Fibromyalgia patients often suffer from sleeping problems I decided to post about to allow readers to get something for nothing as it doesn’t happen often enough.

Now the word is out the deal probably won’t last very long as it will soon, probably, be overwhelmed and the offer withdrawn so if you want to take part the don’t hang around. Obviously speak to your doctor about these tablets before taking them as you should do with any medication, even over the counter or herbal/natural remedies. Drug interactions can be lethal so don’t miss this very important step and be very careful when buying things over the Internet, as we can not verify this company, its website or its products, so it is up to you to do your research. It is worthwhile mentioning that for such deals your really not getting it for free but merely agreeing to exchange your personal details for a sample of a product. They can then use your details for marketing unless you tell them not to. However your data remains your data so you can request at any time for them to delete your data and they are lawfully bound to do so because of the Data Protection Act. Also remember you might not know by then if the company have sold your data on, so before you sign up choose if this is something worthwhile for you, if it is then great.

This product is not suitable for asthmatics.

I would be grateful for feedback on these, do they work for you? Comment on this post bellow.

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