Can Labour fulfill their promise to build Active Travel network?

 

FEW can have missed that historic recent announcement, stating that Labour is to invest unprecedented levels of funding to build cycling networks?

The designers of Royce Road junction, Manchester
one of the few in Britain to incorporate traffic light controlled
crossings for cyclists and pedestrians

.                      

After decades of hollow promises from previous governments, the new transport secretary Louise Haigh has promised a properly funded Active Travel network.  It takes the breath away!

But will it happen?

When Labour won the General Election in the summer they inherited an economy trashed by the outgoing Conservatives, according to the financial experts.

As a result, says Labour, they have already had to cut back on spending, notably and controversially on the fuel allowance, to try and balance the books. So will they have the necessary £billions for cycling?

Besides, we should wait until cycling experts have examined the proposals before we get carried away with enthusiasm.

Nevertheless, this is what I had hoped for from Labour, since their landslide victory in this year’s General Election consigned the gobshite Conservative government to oblivion.

Too strong a word,  gobshites?

Oh, I don’t think so, because they have left us in the shit, literally, with our rivers and streams and coastal waters now polluted with raw sewage.  This is courtesy of the water companies created by the Conservatives when they sold off the utilities decades ago. It followed that the newly created water companies would prioritise dividend payments to investors over maintaining infrastructure. So, Gobshites, all of them. Dam their eyes.

But back to cycling.

No government, Conservative nor Labour, has ever put up the £billions necessary to fund the creation of a national cycling policy.

But I do recall a couple of landmark decisions these past 30 years, which have provided cycling with a leg up.

I refer to Labour creating Cycling England - some 20 years ago - with a £5m first handout which led to the development of “cycling towns”.

 That investment was to put flesh on the so called National Cycling Transport policy launched typically without any money by the Conservatives in 1996.

And Cycling England did wonders with the little money they were given by Labour (£5m to start with, increasing a little each year).  This raised cycling’s profile in some 27 towns and cities over a number of years with small but nonetheless effective schemes – a cycle lane here and there – covered cycling parking for a school in one town, provision of hire bikes in another.

Each small scheme proved that if you provide for cycling, people will cycle.

Sadly, Cycling England was shut down by the gobshites when they came back to power some years later.

They did redeem themselves somewhat with the creation of the Active Travel Policy, which has seen the appointment of Olympic champion Chris Boardman as commissioner in 2022.  But they only did this because of relentless pressure over the years from Cycling UK and other campaign groups.

But again, it was all smoke and mirrors, for the funding provided was never going to be enough to meet the government’s own target to increase cycling and walking.

It was the sort of trick the Conservatives routinely pulled. They announce grand schemes, such as the 40 new hospitals promised by Boris Johnson, and make speeches of cycling along “sun dappled” cycle lanes but without any meaningful funding to see them through.  

In was quite deliberate, to create the impression things were being done when nothing much was being done at all.

Haigh pointed out the strange anomaly that exists; whereas a transport charity Sustrans has created and maintains the 12,700 miles long National Cycle Network (NCN) – a mix of traffic-free paths and quiet roads winding about the land - and yet governments run the national road and rail networks.

It’s worth adding that the NCN, created by visionary John Grimshaw, was intended also as a catalyst for networks to be built in the towns and cities it passed through.  This has never been achieved.

Haigh told The Guardian we are in a climate crisis and a public health crisis. Getting people walking and cycling is essential to solving both those issues.

It is utterly essential to develop a national integrated transport policy, she said.

It has taken over 50 years of often frustrated campaigning to get to this.

What next?

 

 

 

 

 

 

Private Eye on the British Cycling-Shell deal

You can always count on satirical magazine Private Eye to expose embarrassing issues businesses might want to keep quiet.

In this case it is British Cycling under investigation (Eye issue 1630, August 16-29). Specifically the story is the ongoing controversy about their controversial eight-year sponsorship deal with Shell, the oil giant which continues to invest heavily extracting fossil fuels despite science warning this will further contribute to climate change.

The Eye reported that the campaign group Extinction Rebellion had asked cycling’s Olympic hero Chris Boardman to lobby BC to drop its Shell sponsorship, when they protested at the National Cycling Centre on the eve of the Paris Olympic in July.

Protesters carried placards declaring: “Shell lie, Cyclists die” and “Chris, Hate Shell”.

The BC-Shell deal caused a furore among BC members, and led to resignations.

The Eye reminds us how in 2022, Shell UK offered the “green” sport an eight-year partnership, claiming the deal “would help British Cycling ‘accelerate’ its journey to net zero”, the supposed point at which climate change might stabilise if we cut back on using oil.

But how Shell imagined that would improve their image when they were set to invest a further £46bn in fossil fuels by 2030 is anyone’s guess, the report said.

Whatever Shell was investing in green policies was far outweighed by the £Billions they were spending on oil extraction, environmental groups claimed.

In past blogs I have commented on how the oil Industry has also invested heavily in PR campaigns to discredit the science on climate change, despite their own scientific research 70 years ago informing them that burning fossil fuels would lead to the present scenario.

It’s all tied into growth economics, of course, allowing us earthlings to press on regardless burning oil and speeding towards our own destruction. Once the money starts rolling in – or medals – we cannot stop!

Remember the DuPont story also discussed here recently, covering the story of how the American chemical giant knew early on that the shit they created to make Teflon and other water resistant products would eventually poison everyone on the planet exposing us all to potentially life-threatening illnesses.

Just as the oil industry carried on regardless, so too did DuPont, polishing their “green” credentials by sponsoring bike racing.  There was money to be made.

And British Cycling’s excuse?

Well, clearly they needed a big spender like oil rich Shell to bankroll their expanding organisation and maintain their winning ways.

Ever since the days of Sky funding which turned BC into the top UK sports organisation funding demanded they adopt an insatiable quest for international success and specifically for Olympic gold.  They fear failure to deliver will lead to loss of income and redundancies. In some ways success has become a millstone around their neck.

But the pressure is mounting on British Cycling.

The  Eye reports that besides Shell’s sponsorship, BC has also received £10m in funding from UK Sport who have warned them that the Shell “hook up” is a “reputational risk” for them all.

Since then BC has waded further into polluted waters, signing a funding deal with Lloyds Bank, themselves under attack from activists for funding fossil fuel and arms companies.

All hail Tadecaj Pogacar - cue 'haters'

 

The Giro-Tour double winner, wonder boy, Slovenia’s TADEJ POGACAR, astounded us all when he completed the famous Grand Tour double this summer, victory in both the Giro d’Italia and Le Tour de France. This feat has been accomplished by only a handful of the greats, the last time by sporting legend, the late Marco Pantani of Italy in 1998.

And before him, Ireland’s Stephen Roche in 1987; while the greatest of them all; Belgium’s Eddy Merckx did so three times during his reign. In the women’s Grand Tours, the Netherland’s Annemiek  van Vleutin completed the Giro-Tour double in 2022.

Tadej Pogacar with Giro trophy.

Pogaca, 25, held us spellbound by his attacks.  His instantaneous acceleration- as if fired like a missile from the leading group, soaring away in the mountains of Italy and of France. Although his valiant rivals in Le Tour, Denmark’s Jonas Vinegaard and Belgium’s Remco Evenepoel spiritedly matched his attacks for a while, they lacked the firepower to take him on and would fall minutes behind by the end.

He killed them. There was no one to touch him. It was like a first cat riding with thirds. He won six stages in each Tour.

It was a thrilling display, day after day and I was gripped. This was superb entertainment: and then on the fourth day, a voice deep inside me, said, Whoa!

There is no denying he is a special athlete. But where does he get such strength.  We often joke about what the stars have for breakfast. What does Pog have for his breakfast? Let's take a light hearted look. The pictures below may offer a clue.

"She's had her Weetabix", goes the add, comic TV commercial portraying a youngster  hooking a submarine on her line, suggesting their cereal gives  you great strength.  So does Pog have his Weetabix?              

Or is it more likely he eats the Balkan bread, below, ironically named Pogaca! Folklore has it  mothers bake this for their men when making long journeys and facing lots of challenges.

And yet, unsurprisingly and inevitably, his high pace has raised eyebrows and prompted talk on the online news channels. The following, quoted from Velo:

“Tadej Pogačar (UAE Emirates) is facing insinuations of “technological fraud.”

Velo refer to a report in Swiss newspaper Le Temps which said some riders in the peloton, speaking off the record, suspect some teams are using “motor-doping.”

They claim they are hearing “strange” noises in the rear hubs of bikes used by leading riders in a number of teams.

Pogačar pushed back against new suspicions that his insurmountable lead is ill-gotten, said Velo.

“I don’t know. We don’t hear any noise,” a bewildered Pogačar told journalists. “We don’t use anything illegal. It’s all Campagnolo materials … I don’t know what to say.”

 

The UCI clearly believe that electric motors are being used by some in the peloton. Whether that was during Le Tour I don’t know.

The technology exists. It is out there, perhaps hiding in bottom brackets here and there.  They first came to light when a female cyclo-cross rider was caught using one some years ago.

So now, as well as testing for urine and blood anomalies, they are scanning bikes for any signal that may betray electric trickery.

Pog has called the accusers “haters”.

 Yet, when we saw him fly up those steep ramps breaking records set by past riders who are known to have doped, were you among those who cried out, its as if he had a motor! But we didn’t really mean it. Did we? It was meant as a compliment.  It was just a reaction to seeing something few us of witnessed before. No one has ever ridden like that, have they?

Pog responded by declaring the sport has moved on from the bad days when cheating was rife, this was new science, greater understanding of training methods and diet, better bikes, better equipment, it is this that has made the difference.

Much is also said of his immense natural physical ability.

And if you watch that footage again, those flights up and over the peaks, the body language was different to riders on electric assist bikes. Assisted riders are hardly putting any effort in, there is no body movement, or very litttle, Admittably, they are just ordinary mortals.

Pog, by contrast, was thrashing the pedals in a whirl, his body though looking relaxed, was bent to the task.

So no motor, in my opinion.

We read that riders nutritional needs are now individually catered for, prepared according to the objectives day to day.

In the bad old days, being “prepared” often meant being built up on a diet of questionable substances.

No longer, the new younger riders say, the sport is a lot cleaner. 

As for supplements and medicines, there has always been a need to sustain a rider’s health to boost immune systems which take a hit in a long season. We know that riders have always had to remain wary of using over the counter medicines which may contain banned substances, however miniscule.

Supplements can be a minefield.. One such judged safe to use is Creatine, produced naturally in the body and also manufactured and available over the counter.  Creatine can enhance performance - but to acceptable levels. It once came under scrutiny but was passed OK.

Unlike the rocket fuel, the blood booster EPO which was widely used and is banned.

Its tricky business looking after an athlete.

Sadly sport’s legacy – especially that of cycling - has been tied up with doping for over 100 years, and it's not easy to overlook that.

We need only go back to 1998 and the Festina Team drugs affair which rocked Le Tour and shook cycling to its roots.

Ironically, the year 1998 was the year of Pog’s birth. It was also a milestone in cycling history.  The very same year that Marco Pantani scored his Giro-Tour double, a troubled but likeable man, known to dope but revered in Italy to this day.

1998 was the year doping scandal came close to killing our sport.

It began when Willy Voet the Festina team soigneur was on his way to the start of the 98 tour.  He was stopped by police at a small Franco-Belg border with a team car full of drugs: Cocaine, amphetamines, EPO, heroin.

The shit hit the fan. Festina was kicked out of the Tour. We would learn how French heartthrob

Richard Virenque kept a fridge full of EPO.

Voet wrote a book (Breaking the chain) in which the clear inference was doping was rife.

The sport went very quiet. I do not recall any backlash from other teams to Voet’s book.

The Tour was horrified, proclaiming they had no idea.

Then came 1999 and the Le Tour said this is the “Tour of Redemption”.

We so wanted to believe. 

Especially as the young American, recently recovered from cancer, Lance Armstrong went on to win the Tour. All hail Lance, cancer survivor, clean tour winner. It was a fantasy and I for one swallowed it.

And the miracle man, the sport’s saviour, went on to “win” another six Tours, one after the other, seven in total, an absolute record.

But the “haters” were already at it. And I chose not to believe any of them I believed in HIM!

Well, thank you, Lance, baby.

I went on ITV lunchtime news the day of his seventh victory to be asked, is there anything in these stories about Armstrong doping?

No, no. I don’t believe so, I said. He was a cancer survivor, a remarkable athlete, a man raising money for cancer sufferers, feted all over the world.

On the podium at his seventh victory in Paris, he said he felt sorry for those who could not believe.

And he smirked for the cameras.

Then a host of whistle-blowers blew him apart.

They began to speak out, to accuse him. And then he finally dropped the bombshell on American talk show host Oprah Winfrey's show, who asked him. "Have you doped?" 

Yes, he said, he had doped all along.  He was on EPO, rocket fuel.

Not just him, but his team, too. Many in the Peloton were on stuff, he claimed. That's why he decided to take EPO.  The whole sporting world was rocked to the core.

So, you see, Pog, that guy, Armstrong ruined it all.

I thought I will never be able to trust anyone again.

They say the sport is much cleaner now. Right!

We hope so.

But you know what; I’m a sucker for feel good stories.  And your electrifying performances these last few years, and especially in 2024, making you a three time Tour winner, thrilled us to the core.

As for Jonas Vingegaard, winner in 2022 and 2023 when he beat you, this year you relegated him to second overall.

Mind you it must be remembered; Vingegaard’s serious crash in the Basque tour earlier this year meant he came to this year’s Tour with limited preparation. Yet until the final week he looked as if he might succeed, even snatching a mountain top stage win from Pog.

 

And then there is Remco Evenepoel, 24, making his debut in this Tour.  The World TT champion and now Olympic TT champion in Paris last week, he rose to the challenge.

He won a stage and the white jersey of best young rider before taking third overall.  

“Pog, he’s from another planet,” said Remco. He had no regrets, was proud of his podium placing.

To go back to the beginning. So, Pog, what are you on?

What is the secret of your diet?

Here’s a funny thing. I looked up the name Pogacar, to see what might be revealed. As it happens I also discovered that there is a Balkan bread – yeast free – which goes by the name of Pogaca, a very similar spelling with just the letter “r” missing at the end.

According to Hungarian folklore, mothers would bake a loaf of Pogaca for their sons to take on a long journey of many challenges.

So, you’re secret is out, Pog.

It’s not Weetabix providing fire power, it’s bread.

You are just using your loaf.

 

 

 

Why no marshals visible on side roads at UK championship?

 

Guardian Angels once again provide safe passage for a major British cycle road race. I refer to Sunday’s (23^rd) British Cycling national road race championship at Saltburn in North Yorkshire won by Ethan Hayter (INEOS) with a late lone attack from his two breakaway companions. I was watching the event on Discovery Channel.

I couldn’t help but notice that once again, no marshals were visible on many side roads; nothing to stop a vehicle from being driven out onto the course which I presume is run under the otherwise excellent police escort rolling road closure system.

I apologise if I am mistaken, but I cannot image how it is  Spanish tv coverage of the Tour of Spain picked up a marshal on every junction viewed, and British camera's on home races here missed doing so! We couldn't see them because in  many cases static marshals simply were not deployed.

Besides, I was told years ago when I noticed this, that that rolling road closure provides all the security needed. I beg to differ.

They sweep by, pausing at side roads if cars are present to instruct drivers to wait. Presumably they are trusting drivers to decide when it is safe to continue. But what if there is a chasing group bearing down a few minutes later?

I have seen such a group pass unguarded junctions well after their escort has flown through. All it takes is for a car to turn up after the cop has gone.  And the chasing group is unsighted on a bend seconds away bearing down on what they think is a secured road!

This has been the case with the annual Tour of Britain. I think it was last year’s event when it was run at the same time as the Tour of Spain and this enabled me to switch between TV channels to watch both at once.

And I couldn’t help but notice that on the Spanish race marshals were visible on every side turning shown on the TV; or if no marshal, there was a rope or cones across the junction.

This contrasted sharply with the British event.  Although side roads in towns were covered, there was no one on several side roads in the open country.

So, either angels are watching, or Black Magic is at work, and vehicles approaching said junctions find their motors cut out and they roll to a halt until the race has gone by.

Meanwhile…..

MEANWHILE, the General Election looms on July 4.  Thankfully, the European Footy Cup, tennis and from this weekend, Le Tour de France, will happily provide distraction.

And then there are always the Television challenge shows, such as The Chase, Who Wants to be a Millionaire, Pointless, and Mastermind.  

The  General Election, widely expected to be a most glorious funeral for Rishi Sunak and the disgraced Conservative party now dead on its feet after 10 years of fucking up our lives, will result, so everyone seems so sure about,  in Keir Starmer’s Labour party forming a new government and the Liberals becoming the new opposition party.

Unless, horror upon horrors, that grinning oaf Nigel Farage and his Reform party spring a nasty surprise?

Afterall, 17 million voters swallowed his lies promising a better life if they voted for Britain to leave the EU in 2016!

This column is supposed to be about cycling, and so without further ado, let us see what those tireless campaigners for Cyclists Rights, Cycling UK, are doing on the run up to July 4?

Their call strives to be heard above the noise of the traffic and remains unchanged – “cycling needs to become a major transport initiative”.

The response also remains unchanged for so far successive governments have turned a deaf ear.

And given the cost of living crisis, the NHS continuing to fall apart, the threat posed by climate change few want to face up to, the wars in Europe and Gaza, transport issues here barely register on the radar. It seems the big thing on our minds right now – but not mine - is European Cup Fever.

Spoiler alert: Look away now if you do not want to see the result of the European Cup final brought to us thanks to Dr Who taking a short trip into the future to reveal the following news: England 4 – Tory Party 0.

This means that Gareth Southgate becomes the new Prime Minister and his England team form the Cabinet. I imagine that Wembley will become the new seat of government.

CYCLING UK has announced 50 routes suitable for “all the family” and they ask us all to lobby our local candidates to “speak up for cycling.”

Over to Gareth.

On a different planet

 

I’ll be sorry when our neighbour and his family leave town.

Where are you going? I said.

Back home, to Sirius, he said.

Pardon? I said.

Are you serious?

Is that a pun? He said. 

Oh, how funny...No, purely unintentional, I assure you, I said.

Sirius – that’s 8.6 million light years distant, I said.

Yes, we dart back and forth, he said.

You better come in, he said. I owe you an explanation.  I know you will understand.

There followed an absorbing hour during which I learned that our neighbour was in fact from another galaxy. I’m a hybrid, he explained.  Your weather, the air, doesn’t suit all of us. My family has begun to suffer. As for your politics!!!! You’re always fighting wars.

I asked him, why come here in the first place?

Well, we like to travel, he said. We have mining rights on what you call your moon, and your place was handy to visit when taking time off.

Are there others like you? I said.

Oh, yes, tens of thousands. We’ve been here for thousands of years. Your governments are fully aware.

We’re everywhere. The entire staff of Waitrose, or “partners” they call them, they’re all hybrid.  Even sport. Exceptional in endurance sports due to having two hearts and enormous lungs.

 A few are pro cyclists. I can think of one in particular, leaves everyone behind when he attacks. His name escapes me.

Many of the Grand Tour winners were/are hybrids, as is the entire Norwegian cross-country skiing team.

How come you look very similar to us, if rather tall, I said. 

Pure chance, he said. Your people call us the “Tall Whites”. But we’re not all that tall.

Let me ask you, I said. Why has all this been kept a secret?

Ah, well, the truth is your governments, including religious leaders wanted to tell everyone years ago, in the 1950s.

But the Federation of Galaxies forbid it. You are not ready for this. There would be a great social unrest, even revolution. I mean, in the UK alone there were 17 million who voted for Britain to leave the EU – which demonstrated a very poor grasp of reality.

There are thick people like that all over your planet.

And it isn’t for the Federation of Galaxies to tell you the Truth, although it is out there in one form or another, for those who look for it. You have been prodded often enough. The carefully crafted films and sci-fi novels, for instance.

But otherwise, our policy is of non-interference with another planet’s evolvement, he said.

So although you are here, it’s not an invasion? I said.

Oh, no. We’re not into using force. Besides, imagine the supply lines? He said. The cost of assuming control. Much better to let you children of the universe muddle along.

Oh, we’ve helped you along the way. All this new technology that has been rushed in over the past 70 years. From Velcro to Smartphones, all your IT stuff.

But not weapons systems or anti-gravity drive propulsion…Too advanced. We are after all 50,000 years ahead of you.

It would be a bit like giving Christopher Columbus the plans on how to build a Trident nuclear submarine, saying, go on, Chris, build a couple of those.

No chance.

We did interfere a little. Stopped the Cold War for instance. Demonstrated we can shut down

your nuclear missile capabilities if necessary.

Your tinkering with atomic power is worrying because setting those fireworks off would have ramifications far beyond Earth. The ripple effect would knock worm holes out of kilter for a start, sending us to, say Venus, instead of here. And you don’t want to go to Venus, take my word for it.

So don’t you worry your little heads about Putin’s military chiefs who have threatened the UK with nuclear-inspired Biblical type flood to drown you all. 

Exploding a nuclear device in the Atlantic.  Voila. Huge tsunami, so high it would race across the entire breadth of England and Wales at 500kph drowning everyone and radiating the land for 100s of years.

He knows we won’t let that happen, while we are still here.

What do you mean, while you are still here?

We're all going. Two years and we'll be gone.

That's about the time when rising sea levels will begin to take back the land.

Southern hemisphere will take a really bit hit first, and the millions of displaced people will head north, to Europe. You'll have a lot of new neighbours camping in your gardens.

Let's face it, you've will never change your polluting ways which have led to climate change.

Truth is, you're fucked. So were out of here. Waitrose will feel the brunt of it first, no staff. We're flying them out in the first wave.

Oh, dear, I said.

So will you tell the other neighbours who you are, I said, getting back to basics.

No, no. You may, if you like!  They won’t believe you. We’ll tell them we’ve gone to Bristol, he said.

Have you finished you new novel, I said.

Yes, it’s called “Life, the universe and the end of dreams” He said.

 Inspired by Douglas Adams, author of the marvellous book,  “Hitch Hikers Guide to the Galaxy”.

Very funny? Not bad – Adams knew. I think he may have been one of ours. He was pretty close. Touched a nerve back home, I can tell you.

We'll let you know when were off. We'll have a farewell drink down the pub, he said.

I'll look forward to it, I said.

 

 

 

 

 

New offence of causing death by dangerous cycling leads for call to reform all road traffic laws

 

THE new offence of causing death by dangerous cycling, announced last week, will result in cyclists facing the same penalties as drivers and motorcyclists.

There is concern that this new traffic law, however necessary, replacing as it does outdated 19th century legislation, will create the perception that cyclists  are more dangerous than the facts reveal. 

Chris Boardman, Active Travel Commissioner for England, put it neatly into context by stating far more people are injured by cows or killed in lightning strikes than by cyclists!

"30,000 people are killed or seriously injured on our roads every year, less than three involving a cyclist": Chris Boardman.

The new law makes it an offence to cause death or serious injury by dangerous, careless or inconsiderate cycling.

This new offence is not “anti-cycling” insists the Conservative MP Duncan Smith, who made reference to the death of Kim Briggs in 2016.

She died after Charlie Alliston collided with her in London, riding a fixed-gear bike which illegally had no front brake.

The tragedy had the legal profession scratching around to find the most appropriate legislation to deal with this crime.

In the end Allison was convicted of causing bodily harm by “wanton and furious driving”, an offence under a 19^th century legislation.

This drew criticism that this old law clearly did not cover circumstances such as that which led to the death of Briggs.

Cycling groups issued a collective sigh at the announcement of the new legislation because this did not address wider concerns about road safety.

Cycling UK’s head of campaigns Duncan Dollimore was quoted in The Guardian saying it was clear work needs to be done to make the roads safer for everyone, “but tinkering at the edges of reform will be adding new offences to existing road traffic laws which already aren’t working.”

He said what was needed was an in-depth review of road traffic laws and penalties promised 10 years ago.

“It’s time the government answered our consistent call for a full review,” said Dollimore.

 Now here’s a thing.

Duncan Smith, who backed this amendment to the criminal justice bill, is a curious bedfellow when it comes to upholding the law.

It wasn’t so long ago that Smith was encouraging people to commit criminal damage by attacking ULEV cameras in London.

 

 

 

 

 

 

EDS and the shame of our health service

 

MILLIONS of people world-wide are let down by health services continuing to dispute well-grounded international scientific research into the serious genetic disorder,*Ehlers Danlos Syndrome (EDS), and Hypermobility Spectrum Disorders (HSD).

*EDS refers to a group of inherited connective tissue disorders that affect various organ systems.

                                                 The zebra symbolizes the rarity and uniqueness of EDS and HSD,

                                and it serves as a reminder to consider less common diagnoses 

                                                                 when evaluating symptoms. 

“No other condition in the history of modern medicine has been neglected in such a way as Ehlers Danlos Syndrome” – Professor Rodney Grahame, Rheumatologist.

Professor Grahame advocates for a holistic approach to managing EDS. This includes addressing not only physical symptoms but also considering the impact on mental health, quality of life, and overall well-being.

He encourages doctors to listen to their patients, validate their experiences, and provide comprehensive care.

I’ve written about this condition in this column before – concerning our daughter who is afflicted by EDS and associated chronic illnesses including POTS (Postural Orthostatic Tachycardia Syndrome) as well as with Autism.

This time I am prompted to do so during EDS Awareness Month, which opened with a major gathering of researchers attending the recent HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) Study Update held in April in New York, USA.

The  concern is that most doctors continue to 1: misdiagnose; 2:dismiss the science, telling patients it’s all in their head or; 3: and, this is perhaps worst of all, know something about the condition and yet won’t get off their backsides to learn more and so help those afflicted.  This is leading to serious mental health consequences.

It is an acute problem in Britain where one of the leading advisors is Jeanie Le Bon, an internationally recognised Movement Therapist specialising in Hypermobility, Ehlers-Danlos Syndrome and Chronic Pain.   (jeanniedibon.com)

She, too, is a chronic pain sufferer who has a lifelong lung condition called bronchiectasis, as a result of three episodes of pneumonia.

She also has EDS and Mast Cell Activation Syndrome (MCAS), *Postural Orthostatic Tachycardia Syndrome (POTS) and Chronic Fatigue Syndrome (CFS).

*POTS: when slightest movement causes adrenalin rush sending heart rate sky high while blood pressure drops alarmingly low, leaving you feint and giddy.

 

 

Le Bon highlights the work of Professor Rodney Grahame in Britain, who is

contributing much to research, clinical practice and education.  Professor Grahame is a distinguished rheumatologist with extensive expertise in hypermobility disorders who is striving for greater understanding in the wider NHS.

What does it mean to those who come face to face with doctors who are unable or simply refuse those to help those ill with these horrible conditions.

Here is an extract from Charlotte Twinley’s story on t

; the diversity and ability blog.

https://diversityandability.com/blog

“I was told it was in my head”: Life with Ehlers Danlos Syndrome

by Charlotte Twinley

 “It can take over 10 years to be diagnosed with Ehlers Danlos Syndrome (EDS).

I was diagnosed after about 5 years by pure luck.

When I was 10 years old, I started to have the odd stomach pain. After various doctors’ appointments and tests, nothing was found. It was suggested I tried going gluten and dairy free on odd occasions, which helped – sort of.

At 12, I started to injure myself a lot more whilst playing netball or hockey at school. Everyone just assumed I was ‘getting too into it’ (which I was, but that’s beside the point!).

Two years later, the stomach pains became worse. More appointments, referrals and tests still showed nothing. I had an endoscopy (where a tube with a small camera on the end is inserted down the throat to look at the inside of my stomach), which came back clear.

A couple of days after an intense hockey training session, I woke up and couldn’t move my legs. My dad carried me to different doctors and I had an MRI which, again, showed nothing. The doctors had no idea. They gave me a pair of crutches to drag myself around with, hoping that it might improve as I could still feel my legs. A week later, I managed to wiggle my toes and gradually – literally step by step – I started to walk again.”

 

Eventually, a consultant found out she was hypermobile (extra bendy) and often injured playing sports at school. He then referred her to a specialist in London.

Many more examinations followed and eventually they led to a diagnosis.

However, there is no cure for EDS and management of the condition is essential – and yet physiotherapists with the right skills are few.

 

In my family’s case, our local surgery was asked by the Royal Orthopaedic Hospital to source a specialist physio for our daughter. This was because they judged her too weak to take part in the Hospital’s rehabilitation program, until she had improved.  Our local medical team failed to respond.

That was 12 years ago.

 Similarly, the consultant at Kings College Hospital who diagnosed her with POTS and also requested our local doctors keep an eye on her. They have failed to do so…unless specifically requested to make a house visit for a “normal” illness, perhaps requiring antibiotics.

To cap the neglect, Surrey mental health services have also denied her psychiatric support because they don’t do Autism!!!!

 

Some facts for you.

EDS leaves you with weak connective tissue which can affect every organ in the body – causing bendy limbs which cannot support you. Or dislocation in some cases.

There are variations:

Classical EDS includes a skin condition – 1 in 20,000 people.

Hypermobile EDS: weak connective tissue, resulting in bendy limbs, and risk of dislocation in some cases. 10 to 30 per cent of the population.

Vascular EDS, the most serious, leads to weakened blood vessels and is estimated to effect 1 in 90,000.