Author Archive

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!

Katie on Twitter @katieisacatokay

An update from me, about me!

I realise I have not posted for a while or been very active on social media. There are a number of small reasons, however I do tend to go through natural phases and I have been concentrating on a few other ventures. I had also put a lot of intensive effort into is website to generate all the information as quickly as possible to give the best chance at growing an audience and to make sure there was comprehensive information for everyone on most subjects.

Medically my Vitamin D seems to be in normal ranges although I have not noticed much difference personally. I’m still on testosterone replacement therapy although the last blood test showed no improvement in my testosterone levels but instead my PSA was elevated and was about double what it should be. I attended a Urology consultation which was an experience, the doctor basically opened with “we need to confirm you have Prostate Cancer,” took no medical history, took no medication list, asked no questions about any other things that could elevate PSA, prescribed me a drug incompatible with my current medication and scheduled a follow up to discuss my next test results for before the test itself. So all in all not very successful and far bellow even the average standard I expect from the NHS nowadays. So its now down to my opinion that its a symptom of Chronic Prostatitis versus the Consultants opinion that its Prostate Cancer, let’s hope I’m correct!

Also becoming problematic is arthritis in my knees, I’ve noticed pain and inflammation while up to now they have just been a bit noisy. I have put on a little weight over the past year or two so it makes sense to be honest. Otherwise I’ve managed to reduce my morphine to about 50% of its peak which is good however I’ve noticed far more problematic shoulders of late and I’m going through Voltarol Emugel P like its water.

Otherwise I’m still here, I haven’t had to do much maintenance of the website as the information is still very current and applicable. I’m also in the process of being prescribed the only drug on this website I haven’t been on so I guess I will be able to provide a personal perspective on it soon, its Gabapentin by the way. I’m still contactable through social media or the contact form so feel free to get in touch, I’m quite bad at monitoring comments at the moment as real comments just get lost in spam I’m afraid. If you do require some response please contact me through social media.

I will however wrap this up as its meant to be a short update and I want to get this online before I get myself distracted with something and forget completely only to find it in my drafts once its a little out of date. I really really hope the site is useful for everyone, I’ve put a lot of effort into it and have tried to cover all subjects relevant for sufferers in the UK.

Free Sample of Opti:5 Gel for Joint Pain


I have just been informed of this free sample offer. This gel may be worth a try for joint pain but always seek medical advice first. Their website lists a 200ml tube for £24.95 and the ingredients are: Aqua, 1,3-Butylene Glycol, N-Acetyl Glucosamine, Acrylates/C10-30 Alkyl Acrylate Crosspolymer, Sodium Ascorbyl Phosphate, Arnica motana extrazt, Rosa canina extract, Hyaluronic Acid, Propylene Glycol, Menthol, Polysorbate-20, Benzyl Alcohol, Dehydroaacetic acid, Benzoic acid, Sorbic Acid, Tocopherol, Potassium Hydroxide, Cl 42090.

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.

The link for the freebie is here. This takes you to there website where the freebie is displayed as a large graphic on the right hand side column.

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

My Manuka Honey update 1 week on

This article is specificly a progress report on my first week taking Manuka Honey after my article Manuka Honey – The Bees Knees?

To start of I would like to say that taking Manuka Honey is hardly any problem at all, as Honey goes its lovely and I certainly haven’t had to spread it on toast or mix it in to food. In fact I actually feel like Winnie-the-Pooh sat there eating honey, something I could get quite used to and I’m sure many of you could too. It’s certainly nothing like taking extracted Aloe Vera which is a rather unique experience and I still enjoy watching the faces of innocent victims who I may have convinced to try some of that.

The positive side

Anyway I digress as ususal. The first three days of taking 5ml of Honey at night were really quite good, I simply had three good days. Now although its rare to have three good days I can not make any assurances it was down to the Honey. The effects felt were an increase in energy and a slight decrease of pain, fatigue and fog. Now say for a moment this was the Honey, I could say that it was more effective than any drug other than Morphine and no drug for Fibro I have taken has been responsible for this scale of improvement. However I can not say this is down to the Manuka Honey, without a proper double blind clinical trial I would not say the Honey is beneficial or push the taking of it. All you can hope for is for me to say something like “I think its worth a try as it could have been responsible for an improvement in me and my great uncle” however we are no means there yet.

The Honey also seemed to have an effect on Morphine withdrawal which is surprising as according to my specialists they don’t know of anything that can truly help in that department. What seemed to happen was a delay to withdrawal, in fact I actually accidentally did not take any Oramorph for 12 hours by accident, this is because I am used to letting my body tell me when it needs morphine as I’m trying to cut down unsuccessfully (but that’s another story.)

The negative side

Unfortunately after three days there was a change, now I have to say at this point I had been advised to increase from 5ml to 10ml a day which I wish I had not done as the increase could also have caused the following problems. Firstly was a change in the effects on morphine withdrawal, Instead of seeing the warning signs I simply didn’t see any, I then hit a big withdrawal wall as if I had been ignoring it for an hour or too. So the a Honey was possibly responsible for increasing the onset in severity of withdrawal. I then found I was having to take quite large doses to rescue myself, something I’m not entirely happy with. Also I have been getting headaches mainly in the evening a few hours before I’m due my next dose. Now this could be because I’m taking it every 24 hours instead of 12 but I am concerned its having an impact on my blood sugar. I get headaches quite a bit and they are normally attributable to a cause, perhaps I have had more sugar in previous days and suddenly stopped (occasional sour worms sweet habit), perhaps I had had too much sugar, a lack of caffeine, dehydration etc etc. So I am quite sensitive to things like that, when I guess the cause right I can eliminate the headache in as little as 10 minutes but sometimes it can last hours after trying everything. In this case I have decide to reduce back down to 5ml and if it continues I’m going to monitor blood pressure and blood sugar levels more as its a little concerning.

So overall in week one it’s been a mixed bag, a very good start to the week but not such a great ending. As I’ve said I have no idea if this is down to the Honey one bit but as people experienced with Fibro will say we know something is responsible for changing something to our normal balance. It’s made things a little more unpredictable and I can just tell there is something going on in my body that’s new. So I’m going to continue with 5ml once a day, I have two Jars and I will see them through as long as side effects are mild or moderate and I will report back. I certainly feel I need to give it more time, perhaps I’m just adjusting to it, perhaps I was fighting one of the many cold viruses going round my family at the moment, who knows. But as ever I will keep you posted.

Product Information

I am taking 5ml of 12+TA “ManukaPharm” Manuka Honey each night

Have you tried a Manuka a Honey?

Do you have experience taking Manuka Honey for CFS/ME/Fibro or any other condition? If so I would appreciate your comments, you can comment in the box under every post, we will never ever ever pass your email address onto anyone and just keep a look out for a confirmation email in your inbox or junk if your a first time poster.

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 published online May 26 2009
Manuka Honey on the 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 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


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

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)

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