February 2, 2012

Fighting Fibromyalgia & Ignorance

Posted in Health tagged , , , , at 2:33 pm by potofcallaloo

Controversial Sun newspaper columnist Rod Liddle has caused a great upset among disabled people and sufferers of ME and fibromyalgia – people who he calls ‘the pretend disabled.’

People like me who suffer from debilitating, chronic muscle pain and exhaustion, along with a slew of symptoms that impact on our daily lives. People like me who live on strong pain killers and medicines just so we can get by. Yet, he calls us ‘the pretend disabled.’

In his latest column he writes, “My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades – fibromyalgia, or M.E.”

Liddle went on to say that being disabled is now “incredibly fashionable.”

“And being disabled is incredibly fashionable. The number of people who claim to be disabled has doubled in the past ten years.

“I think we should all pretend to be disabled for a month or so, claim benefits and hope this persuades the authorities to sort out the mess.

“It has become easier to claim those benefits, partly as a consequence of the disablement charities who, out of their own self-interest, insist that an ever-greater proportion of the population is disabled.”

Criticisms

The crass remarks have been condemned by many charities representing the disabled and people with these conditions.

Pressure group Social Welfare Advocacy responded by saying,

“Rod Liddle’s blatant and insensitive attack on sufferers of Fibromyalgia and Myalgic Encephalomyelitis is absolutley disgraceful and unforgivable. Both of these conditions are extremely debilitating yet despite this many sufferers find it exceptionally difficult to successfully claim disability benefits which directly contradicts Mr Liddle’s claims that claiming disability benefits “is easy”. Whilst a few sufferers will be able to hold down a job with these conditions many more find it impossible and live in constant pain and agony despite the use of very powerful pain relief and pain management techniques.

On its Facebook page, local charity UK Fibromyalgia has called on the British public to boycott News International. The call has attracted a flurry of strong criticisms from its almost 3000 members.

Liddle and The Sun should apologise for this disgraceful article, which has since been removed from the newspaper’s website. It has caused great offence and hurt to the disabled and those of us battling against fibromyalgia and ME.

People like him make life even more difficult for sufferers, setting us back several steps in our struggle to make people aware that these conditions are very real and not all in our heads as some claim.

September 6, 2011

Fibromyalgia Awareness

Posted in Health tagged , , , at 8:54 pm by potofcallaloo

“Fibromyalgia? what’s that?”, “something to do with fibroids?”, “never heard of.” These are some of the responses I get when I mention the word ‘fibromyalgia’ in conversation with people I encounter.

For a condition that affects possibly 1 in 20 people globally and drastically changes the lives of its sufferers, there seems to be little awareness of it. Fibromyalgia is a condition that’s characterised by widespread body pain and a host of other symptoms including:

-hypersensitivity to pain

-chronic exhaustion which can be debilitating

-insomnia

-regular dizziness

-cognitive issues like short and long term memory loss, problems concentrating

– inability to regulate body temperature

-depression and anxiety

‘Fibro’ means fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones); ‘My’ means muscles and ‘algia’ means pain.

There is hardly anyone I know with fibromyalgia who can’t attest to how this dreadful condition impinges on our everyday lives.

Yet, sufferers often find themselves marginalised by skeptical friends, family, co-workers and even general practitioners who many times seem to think the symptoms are conjured up by our overactive imaginations. This has been my continuous experience since a childhood of frequenting my dubious doctor’s office.

“You just need exercise” and “your shoes must be too tight” were some of the responses I got from my new GP, whose office I limped into recently, a couple weeks after I had been unable to walk due to severe pain in the soles of my feet.

Never mind that she had been aware of my diagnosis for over two years, had me seen by a specialist to confirm this diagnosis and frequently writes the referrals that grant me appointments with new rheumatologists (not to mention the increasing prescriptions for pain killers and other meds).

This experience isn’t uncommon among sufferers though. The stories can get quite nightmarish. In fact many of the people I know with FM are in wheelchairs or using walking aids and still face great skepticism!

Many sufferers find it difficult to manage simple lives, relationships and work, and significant numbers have ended up on social care.

A lack of support and awareness only makes living with fibromyalgia even more distressing.

There is no cure for it but I pray everyday for advances in medicine which could put an end to our oftentimes dreaded existence.

Please take some time to learn more about it and spread awareness. It’s fibromyalgia awareness week in the UK but the world certainly needs to know and understand more about it.

June 8, 2010

The New Mephedrone

Posted in Health, Lifestyle tagged , , , , , , , , , , , at 2:11 am by potofcallaloo

Article dated May, 2010

By Alisha Nurse

The controversial drug mephedrone had been making headlines for several weeks and has been made illegal as a result. But already there’s a replacement drug on the market picking up where mephedrone left off and reported to be even more lethal.

Naphyrone is marketed as NRG1 or Energy-1 and is widely available for purchase online.

Researchers and drug agencies say they know little or nothing of its side effects but are warning people to steer clear of the potentially dangerous drug.

A source at a national drugs charity said that relevant agencies have been sent scampering to conduct investigations into this new substance and its presence on the market, but are careful not to draw negative attention alerting more and more young people to the drug.

However, young people across the United Kingdom are already conducting experiments of their own.

I join an internet drugs forum where hundreds of thousands of people across the globe are discussing their experiences with various drugs, including legal highs like naphyrone, the newest in-thing.

Experiences

“If anyone fancies a dabble please think hard about the risks and be careful with the dose – it is F****** STRONG,” warns one user from the UK, who reports experiencing scrambled thoughts, paranoia and numbness before passing out for days.

Other users report experiencing heartburn, chest pains, hallucination, insomnia, dizzy spells, nose bleed, accelerated heart beat, restricted blood flow and weakness.

Another user who says his heart felt “restricted” warns that, “this is a very intense, potent and potentially dangerous product.”

Naphyrone was derived from the illegal class C drug Pyrovalerone (once used as an appetite suppressant for weight loss).

It comes in a white powdery form and is ingested nasally.

“Legal does not mean safe”

Dr Alun Morinan, scientific advisor to the drugs charity Hope UK and research scientist at the National Addiction Centre, Kings College says as more drugs are banned, many people are likely to turn to legal alternatives to avoid a criminal record.

“However, legal does not mean safe, especially as we know very little about its effects and whether it causes long term irreversible damage” he says.

He says what’s even more worrying is that drugs like napyrone are popular among teenagers due to easy access and low cost.

Not for Human Consumption

My phone calls, messages and email inquiries to several online head shops promoting the drug went unanswered.

However, most websites market naypyrone openly but as “Plant Food and Research Chemical not for human consumption.”

One online shop advertises naphyrone as a “pond cleaner”, the cheapest price at £5.00, with the warning that “it is not advised to add more than 0.2grams to one pond within 24 hours or adverse effects may be experienced by your pond life.”

Later on, it states in bold, “NOT FOR HUMAN CONSUMPTION.”

In reality, online shops use the language of online drugs forums where people do not acknowledge using legal highs but attribute usage to their ‘pets’ or friends for instance.

“Pond” as used by this online shop in question is metaphoric for drug users.

At another online shop, the cheapest bottle goes at £9.00. In fact, it doesn’t come cheap at all, but prices can be competitive in this market where shop owners are trying to make a profit before amendments to laws eventually ban their hit sellers.

Another website offers home delivery with a ‘special’ starting from £3.50.

Cat and Mouse

The Advisory Council on the Misuse of Drugs (ACMD) is now investigating the case of naphyrone.

Officials declined an interview but inarguably, the ACMD is caught up in a cat and mouse game, struggling to stay ahead of backstreet chemists supplying the legal drug.

The ACMD’s 2010 report on mephedrone mentions naphyrone but states the drug could not be covered under the generic ban of cathinones, of which mephedrone was the prime concern.

Cathinone is a naturally occurring stimulant found in the khat plant and used in drugs like ecstasy and mephedrone. It is controlled but the make-up of legal drugs like naphyrone is altered to evade the law.

The ACMD’s report states that “Irrespective of whether controls for the cathinones are implemented under the Misuse of Drugs Act 1971, the rapidity and easy availability of mephedrone and other cathinones (including vendors that can deliver to individual addresses) does raise the question of whether other legislation and regulation should be available.”

Public Pressure

This question is one Dr Morinun has considered as well. He argues that the mephedrone ban came as a consequence of public pressure rather than medical scientific evidence.

“It was also a good vote winner. I think there should be a more reasoned approach to naphyrone but a start might be to ban its import – it has no legitimate use” he says.

DrugScope’s Chief Executive Officer Martin Barnes says that “Mephedrone and related cathinones were classified as Class B drugs because their harms are similar to other substances controlled by the Misuse of Drugs Act. It is likely that in time, some of the compounds now being sold as replacements for mephedrone will also be brought under the Act.”

This is likely to present a challenge to the new government.

Because the recurring problem, according to the ACMD report is that “the market for derivatives of cathonines is still evolving and new replacements will continue to appear.”

The ACMD says it is considering a number of approaches like a ban that includes the specific names of substances and several generic definitions.

While this may be an option, it means the ACMD and the Cameron-Clegg administration will be faced with the repetitive task of continuously banning new legal drugs.

Deaths

Whatever approach the ACMD uses, public pressure is likely to start mounting again if any deaths are linked to naphyrone.

In the recent past, mephedrone has been blamed for at least 18 deaths in England and seven in Scotland.

On a popular drug forum, many fear that it’s only a matter of time before naphyrone begins to claim lives as well.

“This drug will kill people I have no doubt about that, it’s too powerful at a relatively low dose and the way it works means people are quite likely to redose and you don’t really know how bad things are until an hour or so after the redoes” says a 24 year old male, going by the name Boris.

Earlier, he reports re-dosing to calm his anxiety and almost phones an ambulance for fear of having a heart attack.

The deceptive trap that many naphyrone users like Boris apparently find themselves in is after re-dosing to amplify the effects or calm anxieties almost all report feeling extreme pressure on their hearts.

Worry

Now many users are worried that cardiovascular arrest might be a likely consequence of over dosing on naphyrone.

The problem here with legal unregulated drugs is that no one knows how much is too much; of course, until there’s a fatality.

It’s a message that drug charities can’t seem to reiterate enough.

“Using any drug comes with risks attached, but the really worrying thing about the numerous chemicals now being marketed as legal replacements to mephedrone is how little is known about them and their effects.  Many of the chemicals now on sale have either never been clinically tested or have undergone only limited research” says Drug Scope’s CEO Martin Barnes.

Boris, who’s experimented with napyrone vows never to touch it again.
“If you dose again to remove anxiety or to try and obtain euphoria similar to mephedrone you are putting ur heart into a very very dangerous position and the side effects are long lasting. PLEASE USE EXTREAME CAUTION BUT MY ADVICE IS TO LEAVE THIS BAG OF DEATH ALONE” he warns in an online message.

His post attracts a slew of comments from agreeing naphyrone users.

Interest in the mephedrone replacement is showing no sign of curbing however.

Any new controls are guaranteed to cause starkly similar reactions to the mephedrone ban. The price of naphyrone will skyrocket on the black market and drug users will stockpile for rainy days until yet another precarious replacement hits the legal drug scene.