Well it turns out there is one, I am learning something new all the time.
Now here is where it gets interesting, especially if you are a sufferer or close to someone that is ...
On the page I found it also lists all the drugs that work on this horrid condition, including that one that Dr Kirkham of Guy's Hospital had not heard orf despite it being the only drug that works on the core problem ... sleep, Sodium Oxybate (brand name Xyrem).
Now I cannot find the damned web page!
Anyhoo ... on the webpage it states a few things I did not know ... one of them a new drug for Fibromyalgia called Milnacipran (brand name Savella). This works like Amitriptyline but turns out works on the specific neurotransmitters that affect us with FMS! Sounds too good to be true but there is a greater lean towards this drug for FMS sufferer and many have claimed it works very well.
However, this still does not deal with the lack of sleep problem and it reportedly only works with the pain and not the fatigue side of things of FMS. Still, better than nothing.
I also learned that both drug companies to both drugs, maybe one company for both as I cannot remember, approached Europe about clearing them for use for Fibromyalgia and to the drug companies surprise Europe said no to both?!
So I got annoyed with this and decided to 'tear a new one' off the European Medicines Agency over it, their bureaucratic crap and the fact that they are not being very nice to sufferers of not just Fibromyalgia Syndrome but obviously a great many sufferers across the board!
Would you like to see the letter? They have already acknowledged my letter ...
30th November 2015
European Medicines Agency
30 Churchill Place
London E14 5EU
30 Churchill Place
London E14 5EU
FIBROMYALGIA SYNDROME MEDICATION
I have had Fibromyalgia Syndrome for nigh on twenty years.
I had been pressing hard for a diagnosis for 13 years when I discovered Fibromyalgia and self diagnosed it as that affecting me. I have in the region of 120 symptoms, so it answered many other things that idiot GP's across six surgeries, over a dozen, and six hospitals failed to spot.
I argued with the above Doctors the whole time.
I not only proved I was correct but I also discovered that they, the NHS, had known I had Fibromyalgia for at least three year and lied to me about it.
I recorded them for several years and even many admitting they had lied and been asked to lie to patients.
I have recorded many diagnosis that was also retracted.
I can assure you that many of my endeavours have been picked up, mimicked or mirrored by the varous news media outlets.
Because I post on blogs and of the many subjects, primarily science, that I over I also cover corruption both in the public services, oh and the NHS are by no means alone in corruption, and private companies.
I have well over 100GB of data.
However I have still had some issues even after diagnosis and still am today.
I had my Fibromyalgia confirmed at Guy's Hospital by a Doctor Kirkham and a specialist in FMS who also spotted and diagnosed a physical problem with my right knee, done by performing a Lachman's Test. However I was shocked to discover that he had never heard of Sodium oxybate, Xyrem.
I was already aware that Sodium Oxybate was the one and only drug that dealt with the source of the issue with Fibromyalgia Syndrome and one that you cannot deny is pretty serious …
Lack of stage 3 and 4 restorative sleep? Really?!
Your going to hide how serious this is?
Do I have to explain how many parts of the human anatomy, including the brain itself, that this has a degrading affect on?!
So imagine my confusion when I discover that Sodium Oxybate is not allowed to be prescribed for Fibromylagia Syndrome but IS for Narcolepsy?! Really?! Are you serious?!
Well you quite obviously think yourselves of a different sect of the human race from the rest if us?
To make matters worse there is Pregabalin. At the time of the Lachman's Test on my knee I was promised Pregabalin. I was told that a letter would be forwarded to my GP.
When it arrived the letter had clearly not only been interfered with, likely intercepted, but had the knee condition, the Lachman's Test or mention that I screamed In pain from it and the prescription for Pregabalin removed from it!
Oddly enough someone at the NHS had figured out that I had been recording them but failed to realise I had been doing this for five years or more.
With a grin I was not prescribed Pregabalin as he had told me unless a Doctor prescribed it from Guy's Hospital he would not do it. He had made e turn off several devices so that we were not recorded first.
We rowed for an hour and all the patients heard us.
I offered him the testimony by way of a CD of the whole appointment at Guy's Hospital that included the Lachman's Test along with the promised Pregabalin.
He refused to listen to it based on the same lie he had accused me of … breaking the law, which I pointed out in steps why I had not broken any laws.
To his dismay he later discovered that I had indeed recorded our entire row for like 50 minutes and posted it on my blog that same night.
It seems the punishment for discovering that 100% of British GP Surgeries lie is pretty bad and I was kicked off for a breakdown in trust?! Was he effing serious?!
I had known for several years I was being lied to and they made the mistake of thinking that he and hi surgery was the first ones to be recorded by me. Nope.
Several Doctors at Abernathy House Surgery
Dr Roobans Surgery, who quit over me
Paperwork on Cartlon House Surgery and …
Forest Road Medical Centre
Where every single one lied!
Along with …
Royal Free Hospital
Chase Farm Hospital
St Michael's Hospital
Potters Bar Community Hospital
and paperwork from Whipps Cross Hospital
Trust me when I state that what I have regarding my chasing down Fibromyalgia alone is a lot but that is not including chasing down diagnosis for …
Right Knee Pain (tricked, manipulated and retractions)
Hiatus Hernia (refused operation for 20 years, severe heartburn like heart attack)
Oesophagitis Grade C
Extreme chronic Nausea
High Blood Pressure, Hypertension Stage 2, often over 170 and 180 at rest along with …
Postural Hypotension that causes me to black out and fall over
Inguinal Hernia (only op I had and it now causes me pain)
Inguinal Hernia (diagnosed then lied about)
Each of those I acquired a mountain of evidence on.
All of this along with two Police Forces and four local councils has all been posted on my blog over 3.5 year and rising and to date I have had in excess of 250,000 people and this is rising faster than ever.
I never lie.
I never ever fabricate.
I am known on my blog for holding my hands up if I have gotten things wrong.
Even with my theories and predictions I very rarely get things wrong.
I have many top professionals in the literary agency fields and even Doctors follow me and my data has been used the late Michael Meacher MP to attack Iain Duncan-Smith in the House Of Commons and in the email request I still have he asks if he can send elements of to the news media.
That was January 2013 and likely where more questionable journalists discovered me and what I had done and acquired?
Why are you screwing over Fibromyalgia Syndrome sufferers?
It appears to be intentional.
I will warn you here and now that if your doing this on that moronic notion that FMS does not really exist, I will rip a hole in your organisation that size of Australia.
I have already done this to dozens of Ombudsman, for every single one of the dozens of organisations I acquired data on I also got the same on their ombudsman.
It is all on my blog.
I wont give you the blog … as most people ignore it until it is too late so it is a waste of time doing so.
Why have you not approved Sodium Oxybate nor Milnacipran for Fibromyalgia and why cannot even get a months worth of Pregabalin to see if this works?
Yeaaah do not state anything about costs … I have already ripped several holes in that one because costs are not merely down to the drug alone. Not prescribing the correct drugs has far, far greater costs in the long run and that does not include anyone taking anyone else to court over the damage caused.
Oh and damage?
How about having twenty years of someone's life destroyed that had the most serious knock on effect to a number of children having lives and stories worthy of the front pages of national newspapers?
Yeah … you had better dig around on my blog for that one … ooh if you can find it of course?!
One last thing to warn you of …
Do not me either patronizing nor condescending ass I have a tendency to not only react but explicitly point out why it is wrong to do that and in each case point out the fact that you organisations are not as bg, important as you think you are and nor possess the intelligence to act that way.
Just trying to avoid a repeat of wars that have occurred many times previous and happening right now.
Do not bother with the whole, 'told in confidence' thing on the letter heads or envelopes either as it just wont wash.
I look forward to hearing from you with great interest.
Martin Haswell BSc