Author Archive

Iain Duncan Smith – Work & Pensions Secretary Resigns


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


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

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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.

Links

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


Manuka Honey – The Bees Knees?


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


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

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

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

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

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

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

The Original Article on Pheonix Rising


Vet Develops Fibromyalgia Blood Test?

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

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

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

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

Links

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

Previous Articles on myfibromyalgia.co.uk

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


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