NO LOVE WITHOUT THE DRUG

Well then, I see that my line spacing is still off in Google's own Blogger Android app?

Even with a new phone that still occurs and so too do the tags, or labels, go missing?! Meaning that the problem is not phone specific so must be very widespread.

*SIGH* all those updates.

Doctors and drugs are a laughable thing these days in my view. After a very rare and relaxed evening of late I have woken a little later than normal but to a building anxiety attack. This was heartbreaking as I thought that now I had taken my first Propranalol beta-blocker I thought they may have subsided for good.

I checked my emails for reassuring replies from Citizen's Advice or Mind but there was nothing and I started to look at Mind's website to see how you actually get to talk to someone. I thought 'you never know it might be a self-referral or walk in service' as I simply cannot recall.

Then I noticed that when I emailed I sued the wrong email address so I emailed again and used another one I found on their site.

The funny thing is in this instance is that I have been waiting for a reply from them and then I have had this anxiety attack that hit me so hard I lost the use of my legs. Since that has happened I have been seen by an emergency paramedic that showed a littler concern, spoke to my GP on the phone who showed some concern, spoken to my GP face to face who showed some concern and prescribed Propranalol and told me to speak to Citizen's Advice about help with support, taken the Propranalol and got up the next morning experiencing an anxiety attack. Yeesh.

So I started looking up about Propranalol and whether it makes you drowsy and the best time to take it and I found something that is just ... typical.

I have mentioned many times over four years that I have wanted to try a drug called Pregabalin but that I have been refused this three times by three consecutive Doctors. Gabapentin is the better drug, the more modern version easier to tailor and, the truth, too expensive.

The hilarious thing about not being given Pregabalin is it is actually the third best drug for the condition of Fibromyalgia. So I literally get given a fourth rate drug that is widely known to make people ill. Yeah ... that is how utterly ridiculous the medicine industry has got. Top of the pile and the only drugs that deals with the core problem is sodium oxybate which is only allowed for narcolepsy. Second on the list is Milnacipran they discovered seems to target the pain receptors specific for Fibromyalgia better than any other drug but is also not approved. Then comes Pregabalin and then Gabapentin. There might be some others that fit into that top three I do not know about.

Oh yeah Cannabis is good too ... but we know how that one ends, lol.

Yeah so there I was just doing some research on Propanalol when I saw someone ask a question about anxiety and mention the word 'Lyrica'. I  thought 'hang on? Isn't Lyrica Pregabalin? Why is it mentioned in a queestion that includes anxiety?'

Well would you believe that someone was given some, lucky *£#4!, by someone else for their anxiety and they worked?!

Oh dear. When you have something that affects you so badly to the point that you want to sling yourself in front of a bus or lorry and then you read that the drug you have been refused for four three years would actually not only get rid of your other condition but this feeling of suicidal doom too?

I just do not understand the people in power who run these organisations in such an idiotic fashion due to just how narrow minded they are. In fact 'narrow minded' is something of an understatement in almost every instance. How long have we had smartphones and the Internet in our pockets now? It is not the simple fact that we could find the truth out on our own but more the case of how can they possibly think in any way that we wont?!

Added to this is the fact that this is not something new or that only occurred in the last couple f years either. I was late to the smartphone party but I have owned a Nokia E71, Motorola Defy, Motorola Atrix, Moto G and now a Moto X and the Moto G lasted me over two years. Each phone I have had has lasted me close to the two year mark. The Moto G probably closer to 2.5 years and maybe even 3? But let us leave smartphones out of the equation for a moment and ask ourselves how long as the Internet been about? I was using it in 1997, possibly 1996, and it is now 2016 so closing in on 20 years.

Mind you it took the health and medicine industry more than 80 years to realise that Fibromyalgia Syndrome is not a made up condition. Yup hard to believe that around the world, or at least in America and Britain, thousands of people who had never met was all having these weirid collections of symptoms occur bbut they thought they were so intelligent that they could state they all made them up because they were too ignorant or lacking the intelligence to realise the truth.

Oh god, I hope these drugs do not take even a fifth of that time for them to realise that they will save their economies and tax pool a lot of money to approve them and prescribe them?! Lol.

I have also seen the term 'Fibro Warriors' used and at first wondered what it meant before then thinking, 'yeah you need to a a bloody hardened warrior to deal with the cursed condition!' LMAO!

The question asked by someone in the link below is 'Will a Doctor in the United States prescribe Lyrica for anxiety/panic attacks?'

https://www.drugs.com/answers/will-a-doctor-in-the-united-states-prescribe-286718.html

EUROPEAN MEDICINES AGENCY - RESPONSE AND REPLY

Well I finally got a response to my questions of why sodium oxybate and milnacipran were turned down for use with Fibromyalgia.

Rather bizarrely they have responded and included Pregabalin with these two which, though I mentioned, is cleared for use with Fibromyalgia as far as I was aware!

Now if I missed something here and Pregabalin has not been cleared for use with Fibromyalgia I am a bit confused as to not only why I was told I would be prescribed it but that not a single GP or specialist I have mentioned the drug to has replied that it is snot cleared for Fibromyalgia.

Conclusion?

It is not cleared by the NHS for use with them and I was given a bullshit excuse for this too as they thought I had been told or informed it was not cleared for use.

Did they just let the proverbial cat out of the bag here?

Anyway I will now paste their full email response along with my reply ...


EUROPEAN MEDICINES AGENCY ..

Dear Mr Haswell

Thank you for your letter of 30 November.

The decision to apply for marketing authorisation of a medicine in a particular indication is not made by the European Medicines Agency (EMA), but the companies concerned. The Agency can only evaluate the evidence with which it is presented and can only approve a medicine for marketing if the benefits are clearly demonstrated and outweigh the risk of side effects. EMA’s assessments do not consider matters of cost and reimbursement, which are handled at a national level.

However, in the treatment of fibromyalgia, good evidence of effectiveness was not shown with sodium oxybate (Xyrem), pregabalin (Lyrica and its generic alternatives) or milnacipran when the companies marketing these medicines applied to the EMA to authorise such use.
In 2011, the company which markets Xyrem (UCB Pharma) applied to the Agency to extend the use of the medicine to patients with fibromyalgia. This involved results from two short-term studies involving 1,121 patients with moderate to severe symptoms and one longer term study involving 560 patients; the majority of the patients came from outside the European Union (EU). Results in the subgroup of patients from the EU in these studies did not demonstrate a clear benefit, either short- or long-term and there was a high incidence of side-effects on the brain and nervous system. As a result the EMA’s committee of experts responsible for the evaluation considered at that time that the benefits of the medicine did not outweigh its risks, and recommended against approving it to treat fibromyalgia. Details of this evaluation are given in the Agency’s assessment report at: http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Assessment_Report_-_Variation/human/000593/WC500106940.pdf.

With respect to pregabalin, in 2009 Pfizer Ltd presented the results of five main studies involving over 3,000 adults with fibromyalgia. Again, most of the patients included in the studies came from outside the EU. After evaluation, the Agency was similarly concerned that the benefits of Lyrica in fibromyalgia had not been shown in either the short or the long term in patients from the EU. There were no consistent or relevant reductions in pain or other symptoms in the short-term studies. In addition, the change in symptoms did not seem to be related to the dose of Lyrica that the patients received, and the maintenance of Lyrica’s effect was not shown in the longer study. At that point in time, therefore, any benefits of Lyrica in the treatment of fibromyalgia did not outweigh the risks of its known side effects. Hence, the Agency recommended that the change to the marketing authorisation be refused. For further information, see http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Assessment_Report_-_Variation/human/000546/WC500076177.pdf.

In the same year, an application was made to EMA by the company Pierre Fabre Médicament for the use of milnacipran to treat fibromyalgia. After evaluation of three main studies, involving 2,960 adult patients with fibromyalgia, the Agency’s scientific experts were of the opinion that the effect of the medicine was marginal. There was again a lack of data on the long-term effects in a European population. Therefore, at that point in time, EMA was once more of the opinion that the benefits of the medicine in the treatment of fibromyalgia did not outweigh the risks, and recommended against marketing authorisation. For more information on this, including details of the assessment, see under the various tabs on http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/001122/human_med_001313.jsp&mid=WC0b01ac058001d124

Should a further appropriate application for use in fibromyalgia be made for any of these medicines, the Agency would thoroughly evaluate any new scientific evidence presented, in order to reach a decision on whether to recommend marketing authorisation.
The Agency’s remit covers the scientific assessment of medicines and the monitoring of their safety once they are marketed, and we are unable to comment on the other matters covered in your letter.

A copy of this reply has also been sent to you by post.

Kind regards


Paul Blake

Stakeholders and Communication Division



MY REPLY ...

European Medicines Agency

I have received your report on the situation regarding the application of the drugs sodium oxybate (Xyrem), pregabalin (Lyrica, though I never said it was refused to be used only refused over money and this has been told to me by at least two Doctors) and milnacipran.

• “effectiveness was not shown with sodium oxybate (Xyrem), pregabalin (Lyrica and its generic alternatives) or milnacipran “
• 1) This conflicts greatly with everything I have ever researched and even solicitors I worked for stated that I am extremely good at research
• 2) This also conflicts with the patients accounts of the use of these drugs

• “In 2011, the company which markets Xyrem (UCB Pharma) applied to the Agency to extend the use of the medicine to patients with fibromyalgia. This involved results from two short-term studies involving 1,121 patients with moderate to severe symptoms and one longer term study involving 560 patients; the majority of the patients came from outside the European Union (EU). Results in the subgroup of patients from the EU in these studies did not demonstrate a clear benefit, either short- or long-term and there was a high incidence of side-effects on the brain and nervous system. “
• This is a … frankly bizarre statement … also ... WHAT side-effects?

• 1) Are you stating that thins are not done this way in Europe in which case why would they ever bother approaching Europe over these drugs

• 2) I very much doubt that drug companies would approach the EU, despite my understanding of their underhanded nature and dislike of them, with drugs that do not clearly work or cause such terrible side effects

• 3) All drugs have side effects and do you not think it I down to the patient when it comes to weighing up the risks to the benefits? Anyone can so no or do you not think that patients are capable of rational thought?

• 4) Further to the first point … where are your own trials?

• 5) Your statement of weighing up the benefits and risks contradicts your statement that there was little or no effectiveness

Do you know what I constantly think of several time each week and have done for the last 7 years at least?

What it would be like to actually take sodium oxybate even for just a week to ee what it feels like to be normal once again.

I also ponder that as the Fibromyalgia Syndrome issue is lack of restorative sleep and that symptoms collect over many years that taking sodium oxybate for just one week may reset everything back to the start prior to being affected by my first ever symptom.

In other words having none at all or only one of the 120 odd symptoms I currently experience.

Another conclusion I have come to regarding just the case with Fibromyalgia Syndrome is that the people that make up the committees and organisations that make thee absurd decisions are idiots made up of friends of people in government, central or local, that have not the first clue about just how bad some conditions can be on the human body as well as the mind.

Your answer has had zero effect in changing that view.

Incompetence, corruption and general skulduggery can manifest absolutely anywhere and in my years of endeavours I have generally found it to be everywhere I look 100% of the time.

In which case and in every instance there is a general protocol that exists for making challenges, legally or otherwise, to said organisations.

I would like to ask of you what exist for you?

Can you provide me with a ombudsman for you or governing body or even a watchdog? I imagine any challenge would be quite tricky for any professional body especially when they have other professional bodies that conflict with their reasons that are based on something as flimsy as …

Side effects of drugs.

This made even said drugs are cleared for ailments that re not even in the same league as Fibromyalgia Syndrome.

Now I will mention my blogs once again.

I blog about corruption and I have covered organisations in the dozens. As big as you like. I have never been challenged bot that is because of who I am and how I do things.

No bullshit. I am honest in everything I do, sincere and to the point no matter how sharp this may be. Except that when I do this I am not doing this purely through my blogs on corruption.

You might have noted the letters after my name? BSc Applied Computing.

I do a blog on computer hardware and software with some gadgets thrown in. But this is not my only subject of expertise and I provide blogs on …

• Batrachology
• Herpetology
• Ichthyology
• Astronomy and Astrophysics
• Orchidaceae
• British Wildlife
• others including Kung Fu, Photography, Music, Movies and more

My corruption blogs alone number around 3,000 posts and some read like Tolstoy's War & Peace.

I have a dozen blogs and the amount of writing involved is astronomical and with each and every one what people see is someone level headed, factual, professional and honest. Someone that does not like what he sees, dislikes the lack of professionalism, abuses of positions of power and what the UK has become.

Someone that has not just gone out and done something about it but has spent years secretly recording, collecting and compiling letters that go back 20 years and publishing everything for to help other victims, people suffering physically, mentally or both.

What surprises people most of all is that I have done this alone and there is one very outstanding endeavour that over-shadows everything I have done previously.

Despite many of my endeavours being worthy of front page national tabloid news this one last one is capable of a front page serial all on its own.

If they are surprised at what I have done and achieved so far with my excess of 100GB of data it is nothing compared to what is coming over the next couple of months. Something that will amass so much attention that it will make the 300,000 visitors I have had thus far look like a drop in the ocean.

While I twiddle my thumbs waiting for this to happen I had some requests to my GP go unanswered and I know all the reasons why. As I have proved them in the past over and over again to show my visitors this is not a localised incident, not a one off but that many Doctors and GP's are lying and are doing so under command.

Indeed many of the stories that have arisen on everyone, not just the NHS, have originated as one my stories.

Indeed if I inform you that the late backbench Labour MP, Michael Meacher, approached me via email in January 2013 requesting if he could use my blog data to atack Iain Duncan-Smith in the House of Commons while end others to the news media I am sure you will realise that even two years ago I had a hell of a lot of data?

I have not even published half of what I have!

So getting back on track …

I found myself being fobbed off again, I looked up the link between high blood pressure, which I have and my father died of a burst aneurysm at 56, I am 47 nearly, and read about milnacipran and it being refused along with sodium oxybate. I then decided to look into who make these decisions and mount another challenge against another organisation.

It kind of kills the time while my secret four year long court battle waits to hit the headlines and gives me something to do while peaking my interest.

So that procedure/ombudsman/governing body I asked for?

I look forward to hearing from you with great interest.

Yours sincerely

Martin Haswell BSc

YET ANOTHER ADDITION - EUROPEAN MEDICINES AGENCY

Well while working out some things and awaiting the outcome of others I decided to look up that which my GP asked me too, the link between high blood pressure and Fibromyalgia.

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.

Except ...

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 ...


EMAIL...

30^th November 2015

European Medicines Agency
30 Churchill Place
Canary Wharf
London E14 5EU
United Kingdom

Dear Sirs

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 …

Guy's Hospital

Royal Free Hospital

Chase Farm Hospital

St Michael's Hospital

Potters Bar Community Hospital

Barnet 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?

So then?

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.

Yours faithfully

Martin Haswell BSc