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Iain Duncan Smith – Work & Pensions Secretary Resigns

Quite simply, here is his letter of resignation in full:

“I am incredibly proud of the welfare reforms that the government has delivered over the last five years. Those reforms have helped to generate record rates of employment and in particular a substantial reduction in workless households.
As you know, the advancement of social justice was my driving reason for becoming part of your ministerial team and I continue to be grateful to you for giving me the opportunity to serve. You have appointed good colleagues to my department who I have enjoyed working with. It has been a particular privilege to work with with excellent civil servants and the outstanding Lord Freud and other ministers including my present team, throughout all of my time at the Department of Work and Pensions.

I truly believe that we have made changes that will greatly improve the life chances of the most disadvantaged people in this country and increase their opportunities to thrive. A nation’s commitment to the least advantaged should include the provision of a generous safety-net but it should also include incentive structures and practical assistance programmes to help them live independently of the state. Together, we’ve made enormous strides towards building a system of social security that gets the balance right between state help and self help.

Throughout these years, because of the perilous public finances we inherited from the last Labour administration, difficult cuts have been necessary. I have found some of these cuts easier to justify than others but aware of the economic situation and determined to be a team player I have accepted their necessity.

You are aware that I believe the cuts would have been even fairer to younger families and people of working age if we had been willing to reduce some of the benefits given to better-off pensioners but I have attempted to work within the constraints that you and the chancellor set.

I have for some time and rather reluctantly come to believe that the latest changes to benefits to the disabled and the context in which they’ve been made are, a compromise too far. While they are defensible in narrow terms, given the continuing deficit, they are not defensible in the way they were placed within a Budget that benefits higher earning taxpayers. They should have instead been part of a wider process to engage others in finding the best way to better focus resources on those most in need.

I am unable to watch passively whilst certain policies are enacted in order to meet the fiscal self imposed restraints that I believe are more and more perceived as distinctly political rather than in the national economic interest.

Too often my team and I have been pressured in the immediate run up to a budget or fiscal event to deliver yet more reductions to the working age benefit bill. There has been too much emphasis on money saving exercises and not enough awareness from the Treasury, in particular, that the government’s vision of a new welfare-to-work system could not be repeatedly salami-sliced.

It is therefore with enormous regret that I have decided to resign. You should be very proud of what this government has done on deficit reduction, corporate competitiveness, education reforms and devolution of power. I hope as the government goes forward you can look again, however, at the balance of the cuts you have insisted upon and wonder if enough has been done to ensure “we are all in this together”.


CFS/ME Through the eyes of a Teenager, a very articulate example of one anyway! (Video)

Having settled down to bed about an hour ago I frustratingly grabbed my iPad and started flicking through Facebook on Flipboard to take the mind of the fact my body doesn’t want to sleep (my body sees day as night and night as day) anyway I’m glad I did as I was entertained by the latest video from @katieisacatokay.

Katie is around 14 or 15 and I know her Mum, Dad & Brother, in fact I know Katie the least but she is probably the family member who I have most in common with. Just because Katie had CFS/ME which is near as makes no difference the same as Fibromyalgia, in fact most doctors will just diagnose one or the other depending which one they know more about, well in my experience. I hold the opinion I have a lot in common with Katie as, CFS/ME/Fibromyalgia takes over your life, well most of it, so by my maths if it takes over your life, its at least over 50% of it, so therefore we probably have a fair bit in common. It’s not exciting stuff of course, just the usual, sleeping, functioning like zombie, being in pain, not sleeping, sleeping to much, wondering if you will get to do that exciting thing or if the CFS/ME monster will crawl out from under the bed and ruin your plans again!

But for Katie she has a bit of a list of exciting stuff to do this Summer as she has just finished year 10 and will be hitting the books in year 11 next year for her GCSE’s, which is a better excuse than anything I can think of to make sure she has a Summer to remember. In fact her video is entitled Chronic Fatigue Syndrome/The List. However it also offers a little insight into what it is like to be her age and have such an annoying chronic condition. Although I certainly had the signs of Fibromyalgia at that age I thankfully didn’t have it quite severe as Katie, although I’m certainly having a good go at catching up since. However I digress….. Katie’s videos on whatever subject are quite pleasurable to watch, she has a keen interest in media and it shines through in her style of professional editing, unique/interesting presentation and quirky random humour. I can’t quite imagine how she manages to go through such a difficult period of her life with such a debilitating condition but the inspiration and hope her videos give make me certain it will all turn out ok.

Lastly if your an earlyteen with CFS/ME/Fibromyalgia I am certain you will find this video useful. Most of my website is geared to Adults with the condition so its about time I did something for the kids although I would urge anyone of any age to give it a watch. Katie, if your reading my advice to you is carry on as you are. Eat plenty of Curry this Summer and although I didn’t hear your mention it I am sure I saw the word “Daisymade” on that list, having been there a few hours ago and having a three year old daughter I also plan to spend some of my time there this summer too!

Click here for the Video (it may take a few hours to be encoded for mobile so if your on a mobile device and its not available check back a little later) it might even inspire me to spend more time editing my dslr video although you will never find me in front of the camera I can assure you! I’m now going to switch off the “mandatory” air con & try and get some sleep as I’m going away tomorrow to have a little holiday (or sleep in a holiday location while everyone else has the holiday depending on how it goes) so for my sleep tonight……….its take two!

Links:
Katie on Twitter @katieisacatokay


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


Free Sample of “Gloves in a Bottle” Dry Skin Lotion

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I thought I would share another freebie that has been brought to my attention. Skin complaints often go hand in hand with Fibromyalgia, CFS & ME as we seem to be super sensitive everywhere else why shouldn’t the bodies largest organ have its fair share of problems too?

This skin lotion may be worth a try. As I say with all freebies I am not affiliated with this company in any way, nor do I benefit from anyone taking up the offer. I also always mention it isn’t really free, its a trade: Your details for a free sample, so consider if it is worth giving away your personal data before you scramble to fill in the form. If anyone has any success with any of these freebies please let me know as I can share it with everyone through our helpfull products section.

A personal update from me: The past month has been a big battle for me, I can not pull my sleeping back round from my usual “awake midnight until 6am and sleep the rest of the time.” This means I’m almost always asleep when anything is actually going on in the world and when I’m awake I am totally fogged out and next to useless, sitting up and writing seems a world away at the moment. I am also trying to reduce my morphine intake as over the summer I threw away my 1/3rd reduction I managed last September to May and shot straight up to 100mg+ a day. So apologies to you all for no posts and to people who have not had replies to emails, its nothing personal, you have just emailed a “fibrozombie.”

Click here to go to their site for the free sample


Elizabeth McSweeney e-books now available on Kindle, Kobo & Smashwords

As the title suggests all five volumes of the Elizabeth McSweeney “Fibromyalgia: Road to Recovery” books are now available on Kindle, Kobo & Smashwords. They are currently £1.99 for Fibromyalgia Awareness Week and the links for all the different formats are available from our Ebooks Section or at the bottom of this post.

Author Elizabeth McSweeney suffered from the debilitating pain and fatigue, associated with the condition, for seven years before finding her own path to recovery. These volumes represent four years of research including current medical papers (referenced), as well as results from her own original ethnographically styled survey, disseminated through UK Fibromyalgia Association. Each volume contains contributions from over forty other individual’s suffering from the condition, including ‘top tips’ for symptom management and daily coping.

Elizabeth says, “I’m not saying you can ‘cure’ yourself in three days, but these are the healing principles and daily protocol I follow to maintain a pain free, medication free and ‘fibro’-free life. I believe the false meme that ‘fibromyalgia is for life’ is causing unnecessary suffering, and my intention is to offer hope and support to anyone taking their own first steps towards recovery”.

More about Elizabeth and her books can be found in our Ebooks Section after I recently updated it after getting in contact with her through Twitter. You can also follow her on twitter here.

Buy now links

The books on Kindle
The books on Kobo
The books on Smashwords


Successful E-Petition on benefits heads to parliament

UPDATE: 27th July 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”

I wanted to make you all aware of some great news on the subject of Disability Benefits, Government E-Petitions and specifically The Secretary of State for Work and Pensions Iain Duncan Smith (IDS).

The Petition in question

The Petition in question was an “E-Petition” filed by Jayne Linney from Leicester and her friend Debbie Sayers. They refer to themselves as being disabled as well as being disability activists. To show you what their successful petition was about I will refer you to the description provided by Jayne when she set the petition up:

“We are both disabled as well as being disability activists. We experience pain and suffering ourselves and see it in our friends, families and colleagues. It is one thing to live with the physical challenges of a disability. It is quite another to hear lies and misinformation every day from our own government.

We have watched sick and disabled friends fall foul of the Employment and Support Allowance process and seen people who are genuinely sick and disabled being left with next to nothing to live on. Some are living in fear of the Personal Independence Payments assessments to come. In this climate, which is confusing and intimidating for some of the most vulnerable in our society, those in power should be operating to the highest standards of integrity and accuracy. Recent reports suggest that the Work and Pensions Secretary may have misrepresented Government statistics to make a political point.”

This quite rightly makes the point that Iain Duncan Smith may have misrepresented Government statistics to make a political point. There has been a lot about this anger within the media and various websites have brought stories to readers claiming to have caught IDS out in his misrepresentation of statistics.

Employment & Support Allowance (ESA)

Jayne also mentions benefits like ESA which has always been a controversial benefit since its conception and has been called unfit for purpose and broken by several disability charities. We have even written articles regarding the sheer volume of ESA paperwork for the claimant and how DWP give conflicting advice about whose responsibility and cost it is to obtain medical reports. Controversy often surrounds ATOS Healthcare who conduct Work Capability Assessments on behalf of the DWP under contract so that decision makers can decide if a claimant is eligible for ESA. There has also been equal criticism of ATOS and their medical reports that regularly find people fit for work when they obviously are not. Many readers may know that it took me 3 years to to secure the correct levels of ESA & DLA I was legally entitled to and since then have helped others fight appeals & tribunals. I often say: To claim you are unfit to work you actually need to be fit enough to work full time on your case in order to prove it and receive what you are entitled to be law.

The Governments attack on “Benefit Scroungers”

Since the government commenced their campaign against “benefit scroungers” attacks on the disabled have increased according to the media. What the politicians do not seem to realise is that people who claim benefits by lying also lie to doctors and ATOS medicals and thus generate the evidence for a successful claim. Meanwhile people who are eligible get turned down when they provide “honest” descriptions of their medical problems that are not exsadurated, that are not “singing from the rooftops” and because they try not to waste doctors time often do not have the documentary evidence to back their claims up. Unfortunately they soon get turned down at the first hurdle after an ATOS assessment and once this happens it is the claimants responsibility to provide evidence, prove their medical was not accurate and pay all the necessary cost and charges.

Anyway back to the petition

People obviously feel the same on mass and I’m delighted to say that that Jaynes petition succeeded in getting the 100,000 electronic signatures required on the 12th June 2013 at 0932 as announced on her blog. Unfortunately there did then seem to be a little confusion but from the government side of things and on July 17th Jayne provided readers of her blog with this update:

“After some confusion about when the petition by myself & Debbie Sayers will be submitted to Parliament; and maybe even more importantly if IDS will attend the Work & Pensions Select Committee – I’m really pleased to share an email I received from Dame Anne Begg chair of the Select today

I am thrilled to confirm that our petition with it’s current 100,433 supporters will be formally submitted into Parliament by Liz Kendall MP, after she receives it outside the Palace of Westminster on September 4 2013.

Many Thanks to all of You who signed, shared, tweeted & pushed for this & let’s hope Mr ID Smith is thoroughly held to account”

Email from Dame Anne Begg chair of the Work and Pensions Select Committee:

“I can confirm that IDS will be appearing before the Work and Pensions Select Committee on Wednesday 4th September where he will be asked questions about the DWP’s Annual Report and the Department’s use of statistics.

Best wishes
Anne”

My Opinion

The fact this petition got over 100,000 signatures is nothing more than fantastic. I don’t think e-petitions are the most inviting way for people to show their support but nevertheless this only means Jaynes victory is sweeter. These victories are probably far less common than you think and this shows the government when they misrepresent the disabled to score political points the public will not accept their behaviour. It also shows them how much the issues surrounding ESA, PIP & ATOS are on the minds of a substantial number of voters. Putting the specific issue of the petition aside this victory will make them think twice when considering decisions surrounding disability benefits as they have just been told “we’re watching you” by over 100,000 people.

Regarding the issue itself it is one I fully support, for such a long time statistics have been used for political point scoring but I do believe it crosses a line when these politicians do this when they hold in their hands the lives of some of the most vulnerable people in society. Yes there are those who are making fraudulent claims, this is why we have such offences in legislation as some people are committing criminal offences but I believe it is the responsibility of the government to differentiate between the honest claimant from the dishonest criminal claimant whenever possible. If they do not, if they carry on as they are, they are encouraging stereotypes and prejudice within society. Whenever they misrepresent the statistics and deceive the public about the proportions of criminal claimants to honest claimants, real people will believe vulnerable citizens are more likely to be dishonest and disabled than honest and disabled. We all know the lessons of how prejudice views within government can be responsible for some of the worst atrocities of mankind.

I have invited Jayne to write about her cause and/or victory, here on my website, as she is more than welcome. They can be made in a post of her own or as a section in a post of mine. She is however very busy as you can imagine and as we are fairly new and less established than some other websites it may not be the most efficient use of her time. If you would like to hear more from her I would direct you to her twitter account and her blog in the first instance.

Background of Government E-Petitions

Their introduction

In the summer of 2011, the Government introduced a new website for registering e-petitions. The Government announced that any e-petition that reaches 100,000 signatures would be passed to the House of Commons Backbench Business Committee.

The Concept

If an an E-petition gets 100,000 signatures The Leader of the House writes to the http://www.parliament.uk/business/committees/committees-a-z/commons-select/backbench-business-committee/e-petitions-/ to notify the Committee that an e-petition has 100,000 signatures. This does not guarantee a debate in the Commons, but triggers consideration by the Committee. This could eventually lead to a debate of the matter in parliament or by the committee.

The Stages

There are a number of stages the petition can go through before a debate, these are:

STAGE 1: Epetition gets 100,000 signatures.
STAGE 2: The e-Petition is presented to the Backbench Business Committee by an MP at a weekly meeting.
STAGE 3: The Committee decides whether to allocate a debate on the subject of the e- petition.
STAGE 4: The Committee decides whether to schedule a debate.
STAGE 5: The Government allocates time to the Committee for debates to be held.
STAGE 6: The debate goes ahead.

Source: E-petitions and the Backbench Business Committee flowchart (.pdf)

The Numbers

There are currently 6,020 open petitions
There are currently 16,225 closed petitions
There have been 19,662 petitions that have been rejected

(at the time of writing)

Topics that have made it do debate

There are only a small number of e-petitions that have made it to a House of Commons debate after reaching the 100,000 signatory threshold, these are:

  • Convicted London rioters should lose all benefits
  • Full disclosure of all government documents relating to 1989 Hillsborough disaster
  • Cheaper petrol and diesel, by Robert Halfon and FairFuel UK
  • Put Babar Ahmad on trial in the UK
  • Make financial education a compulsory part of the school curriculum
  • Give Kevin Williams his inquest under section 13 of the coroners Act, we have all the evidence under this section but keep getting refused
  • Public & Private Pension Increases – change from RPI to CPI
  • Drop the Health Bill
  • Return VAT on Air Ambulance fuel payments
  • No to 70 million
  • Reconsider West Coast Mainline franchise decision
  • Children’s cardiac surgery at the East Midlands Congenital Heart Centre at Glenfield, Leicester
  • Stop the badger cull
  • Beer duty escalator
  • The Oliver King Foundation – Sudden Adult Death Syndrome
  • Stop mass immigration from Bulgarian and Romanians in 2014, when EU restrictions on immigration are relaxed
  • Return Shaker Aamer to the UK
  • There have also been Backbench debates on other petitions that exceeded 100,000 signatories here is a list and an explanation of what took place in parliament because of them:

  • National referendum on the European Union
    (Full day in the Chamber on 24 October 2011 in Backbench time – MP Mr David Nuttall)
  • Remploy
    (Half-day in Westminster Hall on 15 December 2011 in Backbench time – MP Ann Clwyd)
  • Appointment of a Minister for Older People
    (Half-day in the Chamber on 28 June 2012 in Backbench time – MP Penny Mordaunt)
  • These figures we last updated by government 26/04/13

    When will Ian Duncan Smith Appear for questioning?

    Currently we believe he will appeal before the committee on 4th September 2013. This may be available to watch live on BBC Parliament but we should know nearer the time. The best way to keep informed is to follow us on Twitter or click this link which will activate a week before 04/09/13 to show what will be shown on the day in question (you are looking for coverage of Work & Pensions Select Committee).

    Links

    External Links

    The original “E-Petition” filed by Jayne Linney & Debbie Sayers
    Jayne Linney announces her and Debbie Sayers petition has reached 100,000 signatures (12/06/13)
    UPDATE – IDS WILL answer for misusing Stats (on Jayne Linney’s website)
    Jayne Linney’s website
    Debbie Sayers website
    Jayne Linney on Twitter
    Debbie Sayers on Twitter
    HM Government “e-petitions” website
    E-Petitions and the Backbench Business Committee
    E-petitions and the Backbench Business Committee flowchart (.pdf)
    List of House of Commons debates on e-petitions which reached the 100,000 signatory threshold
    Article on IDS and his misrepresentation of statistics (Morning Star Online Website
    BBC Parliament
    What will be shown on BBC Parliament on the day in question (04/09/13), this will not work until a week before this date, you are looking for coverage of Work & Pensions Select Committee)

    Internal Links

    ESA
    DLA
    ATOS Healthcare
    About Me
    Appeals & Tribunals Guide
    Article: “DWP issue conflicting advice as everyone is swamped with benefits paperwork”
    Article: “Benefits paperwork overloading claimants”


    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.


    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.


    Buying Medicines from Online Pharmacies Safely

    As more and more people shop online it is no surprise to find thousands of online Pharmacies, but how do you know they are safe?

    It’s a valid question as many as 95% of online pharmacies are fake. But the more worrying thing is what may be in the medications you buy. At best you may receive genuine medications poorly packaged but at worst you could receive fake tablets that contain none of the active ingredient but instead contain toxic or even poisonous materials.

    Therefore it is important that you do your own checks before buying, but do you know how to do that?

    Well in the UK pharmacies a little graphic they can display on their website:

    20130514-134349.jpg

    However anyone could just copy that graphic, so what you need to do is check their registration number. You do that by checking their registration with the General Pharmaceutical Council . Simply enter the number shown on the graphic into their database and check the listing is for the website you have seen the graphic displayed on. If it is incorrect then you have probably stumbled onto a fake pharmacy website.

    There is a further check you can conduct yourself too. The NHS publish a list of Internet Pharmacies so you can use this as your double check before buying from any website.

    As a final thought: Fraudsters are always thinking up new ways to appear genuine. So always do these checks yourself, never follow a link from a suspect site to a checking service, keep a look out for badly designed sites with bad English and if it looks like its too good to be true, then often, it is.


    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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