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Peter Reynolds

The life and times of Peter Reynolds

Posts Tagged ‘epilepsy

Review. ‘For Ava’. For the Shame of Simon Harris, Fine Gael and the Irish Government

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An extraordinary book. Vera’s achievement as a novice author matches her achievement as a novice campaigner. I’ve worked with people who use cannabis as medicine for 40 years and I thought I was pretty hardened to the tragic and distressing stories but the tears were running down my face as I read this.

I was concerned it might be a rather turgid list of events but far from it, it is a riveting read. It is almost like a thriller, beautifully structured, it grabs you and won’t let you put it down as you have to turn to the next page.

The central message is of the inhumanity of bureaucracy and self-serving politicians who are not interested in an issue unless it can bring them easy and positive media coverage. They are impotent in the face of lobbying from vested interests such as the pharma industry and the medical establishment and prefer to do nothing rather than risk controversy, even while children suffer needlessly.

A magnificent achievement and SHAME on Simon Harris, Fine Gael and the Irish government. They will face judgement at the highest level for their inaction, cowardice and feeble conduct.

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Written by Peter Reynolds

September 5, 2019 at 9:04 am

The Desperate Rearguard Action the British Medical Establishment is Fighting Against Cannabis

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Professor Finbar O’Callaghan

This Arrogant Man Must Face Tough Questions About his Stance on

Cannabis, his Financial Interests and his Breathtaking Hypocrisy.

Professor Finbar O’Callaghan introduced himself at the recent oral evidence session of the Health and Social Care Committee in these terms:

“My name is Professor Finbar O’Callaghan and I am here as president of the British Paediatric Neurology Association which is the association which represents all paediatric neurologists in the UK. I’m also a consultant paediatric neurologist at Great Ormond Street, an epileptologist and professor of paediatric neuroscience at UCL. I have a particular interest in epidemiology and clinical trials and in particular running clinical trials in childhood epilepsy.”

It’s hardly surprising then that in such a pre-eminent position, his opinion on the use of medical cannabis in paediatric epilepsy is regarded as if it had the force of law amongst doctors.  But I point you to his final sentence and his declared adherence to the doctrine and close involvement in the multi-million pound industry of clinical trials.

Note that Professor O’Callaghan is now becoming the medical establishment’s poster boy in opposing the prescription of cannabis as medicine.  He is now disparaging its use for fibromyalgia in adults, something he is no more qualified about than a junior medical student.

Clinical trials cost tens of millions of pounds (at least) and their primary purpose, at which they do not always succeed, is to ensure the safety of experimental medicines, usually single molecule drugs, synthesised in a laboratory, which may be highly toxic.  All such trials are financed by the pharmaceutical industry with the intention of gaining a licence (known as a marketing authorisation) to enable them to sell their medicines at what are invariably huge prices. The businesses and people involved in the clinical trials process earn vast amounts of money and have a vested interest in ensuring that the regulation of all medicines follows this route.

All clinical trials are conducted under the auspices of the Medicines and Healthcare products Regulatory Agency (MHRA), a government agency which is directed, managed and staffed almost exclusively by people who used to work in the pharmaceutical industry. They all continue to benefit financially from the self-reinforcing, self-regulating and self-serving medical establishment which is built on the pharmaceutical industry and its invention of clinical trials.

Clinical trials are the medical establishment’s ‘kool aid’.  They are a panacea for doctors’ ethical and clinical decision making.  If anything goes wrong, even the most horrendous, catastrophic results, if a doctor has prescribed a medicine which has been through the clinical trials procedure, they can wash their hands, disavow any responsibility and move on to their next ‘doctoring-by-numbers’ appointment.  Increasingly, doctors make very few real decisions. Their actions are all pre-determined by protocols and drugs created and approved by the medical establishment.

So cannabis really doesn’t fit into this system and for Professor O’Callaghan unless any medicine goes through a clinical trial in the specialty which he behaves as if he owns – childhood eplipesy, it will never be good enough to get his endorsement and will therefore be shut out of normal practice and very difficult if not impossible for patients to access.  It is, in fact, a ‘stitch-up’.  A term the Professor will understand as he advocates slicing into a child’s brain in a surgical procedure before trying whole plant cannabis as a medicine.

Note that cannabis is not an experimental medicine, nor a single molecule drug, synthesised in a laboratory, nor is it highly toxic.  It consists of around 500 molecules, is synthesised in a plant and has been in widespread use, we know beyond doubt, for at least 10,000 years.  Currently it is in regular use by 250,000,000 people worldwide as a recreational substance.  In modern times it has been in use as a medicine in Israel since the early 1990s, California since 1996, in Canada and the Netherlands since 2001.  There is no evidence of any significant problems or side effects at a population level, none whatsoever where it is used as a medicine under medical supervision. The only evidence of any significant negative effects is where it is used in extremely potent form as a recreational substance by children and even then the numbers involved are tiny.

This is why in every jurisdiction throughout the world where cannabis for medical use is legally permitted, it is through a special system outside pharmaceutical medicines regulation. Every other government that has recognised the enormous benefit that it offers has come to the same conclusion: cannabis is a special case. It is much, much safer than pharmaceutical products. We need an ‘Office of Medicinal Cannabis’ as there is in the Netherlands, or ‘Access to Cannabis for Medical Purposes Regulations’ as administered by Health Canada. Colorado has its ‘Medical Marijuana Registry Program’ and other US states have similar arrangements. Israel’s Ministry of Health has its ‘Medical Cannabis Unit’. In Australia, its equivalent of the MHRA, the Therapeutic Goods Administration, has established its own set of medical cannabis regulations.

None of this fits into Professor O’Callaghan’s model.  His career and his income is founded on clinical trials and specifically in childhood epilepsy, regardless of the facts of actual experience in thousands of patients, he is going to do everything he can to prevent its use except on his terms.  He has a glaring and outrageous conflict of interest and the failure of any other doctor to point this out simply demonstrates how powerful is the medical establishment and its mafia-like control of our healthcare system.

In his written submission to the Health and Social Care Committee, O’Callaghan had the audacity to attack Professor Mike Barnes, based on a scurrilous article in the tabloid Mail on Sunday, for his “significant financial interests in the cannabis industry”.  He also attacks everyone else who has any knowledge or experience in the area, denigrating them as “experts” (in inverted commas).  O’Callaghan’s hypocrisy is breathtaking and it is time the sycophantic, uncritical reporting of his opinions was highlighted. I have no doubt that he is an “expert” but he is not the only one and there are paediatric neurologists in Canada, the Netherlands and elsewhere whose knowledge and experience of prescribing cannabis vastly exceeds his own.  He needs taking down a peg or two in the interests of children – and now adults – whose care he is interfering with.

Cannabis as medicine has never gone away, despite the best efforts of vested interests and the medical establishment to kill it off. After almost a century of being demonised by governments, the media and every quack on a mission, whether qualified or not, it is here to stay. This doctrine of pharmaceutical drugs, clinical trials and ruthless suppression of empirical knowledge has only been around for that same 100 years.  Modern, reductionist medicine has great deal to offer but so does the wisdom of ages and the plants that have long helped us cure, heal and maintain our health.  They can co-exist and we must put aside arrogance and self-interest in order best to serve the people.

 

Written by Peter Reynolds

April 7, 2019 at 5:11 pm

There Was Grenfell, Then The Windrush Generation And Now Theresa May Fiddles While Alfie Dingley Faces Death

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When Will This Tyrant Be Overthrown?

The campaign to save Alfie Dingley’s life looked to have succeeded on 20th March when 108 MPs met Alfie and family at Parliament. That same day, accompanied by Sir Patrick Stewart, a petition of over 370,000 signatures was delivered to Downing Street and Theresa May herself met with the family and encouraged them that everything possible would be done to help. Originally, the Home Office were suggesting that they might issue a licence to allow a bespoke trial of medical cannabis but that changed to a suggestion that they would consider issuing a licence on a ‘compassionate basis’. They also  indicated that they might issue the licence for Alfie within days rather than weeks.

Home Office Minister Nick Hurd MP appears to support the petition delivered to Downing Street. Today (3rd May 2016) the petition has gown to over 650,000 signatures.

A  formal application for a licence was submitted to the Home Office on 16th April 2018 by Alfie’s GP and a consultant neurologist. This was raised at Prime Minister’s Questions two days later and once again Mrs May expressed sympathy and promised that the Home Office would look at it “speedily”.

Now, Hannah, Alfie’s mother, has been told that it could take up to four months for the application to be considered and even then no one can be certain what the decision will be.

Apparently this is because the medical cannabis oil needs to be ‘tested’, whatever that means.  Is this a U turn to requiring a full clinical trial to be undertaken? If so, how can a clinical trial be undertaken on one boy with a particular form of epilepsy so rare that he is said to be one of only nine boys in the world?  Clearly a clinical trial with the normal double blind testing is impossible.  So what other form of ‘testing’ needs to be carried out?

The oil has already been tested on Alfie under the supervision of a consultant neurologist in the Netherlands.  There, having experienced up to 30 seizures per day in the UK, after taking three drops of oil per day he had only two seizures in two months.  The oil is made by Bedrocan, the Netherlands government official contractor for the production of cannabis for medical use and already complies with international standards for Good Manufacturing Practice (GMP).

The only conclusion that can be drawn is that this is yet more procrastination and deliberate delay by a government that is notorious for its inhumane treatment of many people.  Theresa May has a long standing and well documented record of being opposed to any drug law reform and of dismissing the campaign for access to cannabis for medical use as ‘just an excuse to take cannabis’.  With the sole exception of President Duterte of the Philippines, who is engaged in a murderous campaign of extra-judicial execution of suspected drug dealers, Mrs May is the only world leader still calling for the ‘war on drugs’ to continue.

After scandal after scandal after scandal it is difficult to see what will finally bring Mrs May down.  In Britain, where the idea of democracy has become little more than a bad joke, it seems that infighting within the Conservative Party over Europe is a more likely reason for her downfall than the grave abuses of individuals for which she is ultimately responsible.

Let’s be 100% clear, the Misuse of Drugs Act 1971 makes specific provision for any action that would otherwise be unlawful under the Act to be permitted under licence by the Home Secretary.  It would take a single stroke of Sajid Javid’s pen to save Alfie Dingley’s life and Theresa May could have ordered that months ago.

Famously, Mrs May is a practising Christian.  Surely, there must be a special place in hell reserved for her.

Written by Peter Reynolds

May 3, 2018 at 3:54 pm

This is Paul Kenward, husband of Victoria Atkins MP who is the UK drugs minister. He grows cannabis for a living.

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Mr Kenward is managing director of British Sugar which grows cannabis under contract to GW Pharmaceuticals at its 45 acre greenhouse in Wissington, Norfolk.  As confirmed by British Sugar, the cannabis is for production of Epidiolex, GW’s epilepsy medicine which is understood to be 98% cannabidiol (CBD).

British Sugar website

Epidiolex is not yet licensed as a medicine although it is currently with the FDA for US approval and the European Medicines Agency for approval within the EU including the UK.  It’s unclear how the British Sugar operation can be legal as according to the Home Office it only issues licences for research purposes.  Only after the medicine has received a marketing authorisation could it be legally grown for commercial purposes.

This is Mrs Kenward, who prefers to be known by her maiden name of Atkins, in a recorded discussion with Kevin Sabet, America’s most notorious anti-cannabis campaigner who is fighting desperately to see the wave of legalisation in the USA reversed.

Victoria Atkins MP is now a junior Home Office minister with responsibility for drugs policy.  She has spoken out forcefully against any form of legalisation or regulation of cannabis in the UK.  She also rigidly maintains the government’s line that there is ‘no therapeutic value’ in cannabis.  Of course, when it comes to her husband she takes a different view and, of course, she has authority to see licences issued entirely on her own discretion.

Ms Atkins spoke about drugs regulation in Parliament in July 2017:

“We are talking about gun-toting criminals, who think nothing of shooting each other and the people who carry their drugs for them. What on earth does my hon. Friend think their reaction will be to the idea of drugs being regulated? Does he really think that these awful people are suddenly going to become law-abiding citizens?”

Isn’t it is her husband who is exactly the person she is talking about? He seems to be doing just fine as a “law-abiding citizen”.

Together with the Home Secretary, Amber Rudd MP, other cabinet minsters, including prime minister Theresa May, who was the previous Home Secretary, Ms Atkins is running a giant cannabis cartel.  As shown by the International Narcotics Control Board, the UK is in fact the world’s largest producer, stockist and exporter of ‘legal’ medical cannabis.

UK citizens are denied any access to medical cannabis at all, except in the form of another licensed GW product known as Sativex.  However, in practice, Sativex is virtually impossible to obtain.  It is believed that about one million UK citizens use cannabis illegally for medical purposes.

No, this is not a spoof article.  This story is so incredible and outrageous that you really couldn’t make it up.  Yes, the picture of Paul Kenward is photoshopped but all these facts are easily verifiable.

My 11-Year Old Dog, Capone, Is A Miracle Of Medicinal Cannabis.

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capone-saltmarsh

Capone Stanley Reynolds, to give him his full name, has been my faithful, handsome and sweet-natured companion since 2007.  He really is a lovely dog, a strong silent type, very self-contained, gentle, calm and, I believe, wise.

Sadly, he developed epilepsy around the age of five and a couple of years later was struck with severe arthritis which means for the last three years or so he hasn’t been able to walk with me as he used to. However, regular use of CBD oil has transformed his life and I think we will have several more years together before he goes to that neverending walk in the sky where he will be able to run and play as he did when he was younger.

capone-profileHe’s a cross between a Staffordshire Bull Terrier and a German Shorthaired Pointer – which is where he gets his gorgeous coat from, a mottled mixture of grey, black, white and a few touches of orange.  I believe that, apart from his siblings, he is unique and he attracts a great deal of attention.  People say he looks like a leopard and several times I have been offered large sums of money for him.

We have walked hundreds of miles together.  He first came to live with me when I lived in Emsworth, Hampshire.  We learned the pleasure of walking together around Chichester Harbour and I had an article about our adventures  published in Country Walking magazine.

I had once before, in the late 70s, seen someone fall down on a zebra crossing while having an epileptic fit.  Nothing prepares you though for when someone you love first endures a seizure.  It is frightening and deeply distressing.  I can only despair at what it must be like for a parent whose small child suffers so.

Quickly though, you become used to it.  You have to, for your own sake and so that you can look after the one who is fitting.  In fact, there’s not a lot you can do, except protect them from hurting themselves while thrashing about.  Every seizure is different but for Capone they all start with the most intense rigidity, arched back, teeth clenched and violent shaking.  Then, after a minute or so, he will appear to relax and his legs will start a frantic bicycling motion while he froths at the mouth and usually loses control of his bladder, weeing everywhere.  Occasionally he will go back into the rigid phase but at some point, usually within three or four minutes, he will jump slightly as if he’s just woken up – and indeed he has.  Then he wants to stand up, although he doesn’t have proper control of his legs and he will fall over or walk into the wall or furniture.  For up to an hour afterwards he will be wide-eyed, panting crazily and usually ravenously hungry.  Gradually he calms down, until at last he sleeps, exhausted.

Capone’s seizures come in clusters over a 36 to 48 hour period.  To begin with it was about every three hours, so it’s utterly draining, all through the night, never more than an hour or two’s sleep before the next one starts.  When at last it comes to an end, it takes three or four days for him to recover.  It’s almost like he’s had a stroke and he seems stupid, off balance and doesn’t really seem to know where he is.  Thankfully, he always has recovered, right back to normal again and a week later it’s all forgotten.

I can’t remember the exact sequence of events now but it was around this time that the story of Charlotte Figi became known, the remarkable effect of CBD oil on this small child with Dravet’s Syndrome, a severe form of paediatric epilepsy.  It wasn’t long before I decided to try Capone on CBD.

Capone & Carla3

Carla And Capone

His arthritis had also dramatically worsened by now.  We went from walking five miles every day to the point where it was taking the same amount of time for him just to walk half a mile or so.  Both I and my other dog, Carla, were frustrated and suffering from a lack of exercise. Eventually I had to make the heartbreaking decision to leave him at home and just Carla and I would go for a walk.  With a lack of exercise he began to put on weight and it became a vicious circle.  About three years ago it had reached the stage where he couldn’t walk more than about 20 yards and I feared I would have to make the toughest decision of all.  In this state, when a cluster of seizures came along, he truly was a pathetic sight, my wonderful, beautiful dog and friend in so much distress and pain.

I tried various CBD products.  I didn’t really know what I was doing and they didn’t seem to have much impact.  But then, nothing did. The best the vet could offer was rectal tubes of diazepam, like a small toothpaste tube with a nozzle that you stick up his bum and squeeze.  They had no impact at all. I have given him 30mg of diazepam while he was fitting (enough to lay me flat out for 24 hours) and it’s made absolutely no difference.  But then neither did CBD.  There was none of this immediate effect like you see on the many YouTube videos of children being dosed with CBD oil.

pluscbd-goldGradually though the frequency and intensity of his seizures started to diminish.  I had settled on using PlusCBD Gold oil.  Two grams of this dissolved in olive or hempseed oil contains about 500mg of CBD and that would last for a month or so, giving him a dropper full every morning with his breakfast.

He was walking better. On a good day he could now manage a couple of hundred yards.  In the summer he was able to do his very favourite thing and walk up the garden into full, unshaded sunlight and spend most of the day there sleeping on the lawn.  The seizures seemed to have stopped.

Then, perhaps a year ago, I quadrupled his dose.  I now use LoveHemp 20% oil which provides a full 2000mg of CBD.  I dissolve this inlovehemp-20 olive or hempseed oil in a 50ml dropper bottle and he continues to get one dropper full every day.

In the past two years, Capone has had just one cluster of seizures.  It took place over the same period but there were far fewer fits of much less intensity, perhaps seven or eight over 48 hours.  He can walk a few hundred yards now.  He’ll never be the vigorous, fast-running dog he once was but occasionally I take him for a slow walk now for half an hour or so.  If he sees another dog he gets excited and gets up a rather ungainly and clumsy turn of pace – but it’s almost a run and he’s still Capone and I treasure every minute that we have together.  CBD oil, or as it should be more accurately termed, low-THC whole plant cannabis extract, has saved his life.

The Man From The MHRA. Endangering Public Health With Precipitate Action On CBD.

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Dr Ian Hudson, Chief Executive, MHRA

Dr Ian Hudson, Chief Executive, MHRA

The Medicines and Healthcare Products Regulatory Agency (MHRA) apparent decision to designate cannabidiol (CBD) as a medicine is an unholy mess and has been handled about as badly as it is possible for a government agency to deal with a matter of public safety.

The desk of Dr Ian Hudson, the Chief Executive, will shortly be groaning under the weight of correspondence from MPs asking him to explain exactly what is going on.  We know that the MHRA call centre has been swamped with calls from people desperate for information and in fear that they will be cut off from supplies of the food supplement that is so important for their health.  Many are now being told that no final decision has been taken and everyone is in limbo waiting for some coherent response.  We say “apparent decision” because nothing is clear, no public statement has been issued and anything you have seen in the press is from responses to individuals.

Crispin Blunt, the Conservative MP and a member of the CLEAR advisory board has written to Dr Hudson urging him to meet with CLEAR, Professor Mike Barnes and the newly-formed UK Cannabis Trade Association to discuss what interim arrangements can be put in place.  Tens of thousands of people’s health has been placed in jeopardy and not for trivial matters.  People suffering from serious conditions such as epilepsy, chronic pain, anxiety and Crohn’s Disease have come to rely on CBD products to maintain their health. There are also hundreds of jobs in danger at suppliers providing CBD to the UK market.

We know that many CLEAR members have asked their MP to write to the MHRA seeking clarification.  In Crispin Blunt’s letter he goes further.

“The decision to designate CBD as a medicine is directly contradicted by the Home Office’s position that cannabis has no medicinal value.  It is vital that we do not let this anomaly in government policy cause harm to people’s health. I should be grateful, therefore, if you could explain how the MHRA reached its decision, the consultations it undertook, which specific regulatory regime it proposes for these products and whether the continued supply of these products, regulated as food supplements, can be ensured until such time medicinal marketing authorisations can be obtained.”

CLEAR has received a holding response from the MHRA indicating that a meeting will be arranged and that we will hear by the end of this week. Responsible action from a government agency that is supposed to protect, not endanger public health is urgently needed.

 

My Baby Boy, Capone, Is Dying.

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Classic 1Never has there been a more faithful friend.

Capone is only nine, going on 10 but I know that his time is approaching quickly, far too fast for me.

He saved me when I escaped London from a woman and a destructive lifestyle.  We used to walk five miles every day – at least.  Now he has to be encouraged every step, at best half a mile then I have to take him home and Carla and I go out again for exercise

He has a strong, stable, self-contained personality.  He is loving, obedient but independent.  He is my guide as much as I am his master.

He has severe arthritis in all four legs, particularly around the elbows but he also has some sort of spinal problem and you can see it clearly from the way he walks.  For some months anti-inflammatories seemed to help but no longer.  Now he is on 300mg gabapentin twice a day and there has been an improvement, without evident side effects.

He also developed epilepsy a few years ago and about every six months he has a cluster of about a dozen seizures over 24 – 36 hours.

I shall be by his side until the final moment and that will be a very difficult decision to make.  As long as he is happy and enjoying life I will look after him. When he finally goes to that neverending walk in the sky his legs won’t ever hurt again, the sun will always shine and there will be deer and rabbits to chase around every corner.

Written by Peter Reynolds

February 8, 2015 at 12:44 pm