New York Times reporter interested in UK developments

[[lo...]]

http://cepuk.org/2016/10/27/new-york-times-reporter-wants-meet-talk-uk-sufferers-antidepressant-withdrawal/

 

Hope this brings more publicity.

 

Fiona 

 

PS - This link has now been taken down by CEPUK.  I don't know why. 

 

I have just had a reply to my email from said journalist, Ben Carey.  He is going to write about SSRIs first and then will write about benzos so that is good news.

[[La...]]

Phenomenal! The New York Times is considered to be one of the top North American newspapers. It would be great if this reporter's work creates a bit of a wave on this side of the Atlantic. I do hope he'll expand his coverage to benzodiazepines as well.

[[lo...]]

Now isn't that funny, Lapis, guess who has just written to the said reporter putting the case for including benzodiazepines as well as A/Ds.  It seems he is interested in the development of the movement here rather than the ins and outs of drug withdrawal etc. 

 

Here is my email to him so fingers crossed he might read it.  :D

 

I gave him my phone number too. 

 

Dear Ben

 

I have been made aware that you are interested in the above subject.  Many of us involved in the movement have withdrawn from both antidepressants and benzodiazepines as well as other mind-altering drugs. 

 

I would be very grateful if you could include the issue of benzodiazepine withdrawal in your article.  It is such a huge problem here in the UK and in the US.  The recent announcement by the British Medical Association calling for a helpline and specialist services for patients dependent on prescribed drugs includes both A/Ds and benzodiazepines. 

 

https://www.bma.org.uk/news/media-centre/press-releases/2016/october/bma-calls-for-national-prescription-drug-helpline

 

https://www.bma.org.uk/collective-voice/policy-and-research/public-and-population-health/prescribed-drugs-dependence-and-withdrawal

 

Barry Haslam has campaigned tirelessly in this country for 30 years to secure help for those suffering as a result of these drugs.  He has had considerable success at a local level but not at a national level.  Thankfully, CEPUK has been set up and worked hard to get some action in the UK Parliament.  What is interesting to me, as a sociologist, is the fact that it is only now, decades on, that there seems the possibility of action being taken by the medical profession and hopefully the UK Government.  Why has it taken so long?  Perhaps you might consider this question.

 

https://www.madinamerica.com/author/bhaslam/

 

I have made a modest attempt to campaign in Scotland and have been on Scottish TV news and in the Scottish papers.  Unfortunately, my cognition has been extremely poor this year and I have been unable to do anything further.  Thankfully, things seem to be improving again as you will see from this email.  My fellow campaigner, Ann Kelly, has been left severely disabled as a result of withdrawing from the A/D, effexor. She met yesterday with the Minister for Health in Scotland and the Chief Medical Officer.  Perhaps you would like to contact her.  If so, I can provide contact details.

 

https://actionpddwordpress.org

 

http://www.dailyrecord.co.uk/news/health/two-scots-women-who-suffered-7328665#Iq1ZXlGZktK5FwOz.97

 

I see the various campaigns as being closely linked because many of us have a foot in both camps. I also see the current situation with the mass prescribing of A/Ds as repetition of the same scenario with benzodiazepines decades ago.  The story of benzodiazepines is a lesson to all concerned.  You will probably be aware of the recent documentary released by Shane Kenny entitled “The Benzodiazepine Disaster” in which benzodiazepines are likened to Thalidomide.  The difference of course is that those of us whose lives have been ruined by benzodiazepines are largely invisible.  The two foremost experts in the UK, Professors Malcolm Lader and Heather Ashton are prominent in the documentary.

 

 

Personally, I was prescribed many different antidepressants and the benzodiazepine, nitrazepam, for almost 40 years.  The truth is that I have only had a “ half life”.  Four decades of struggling to function on a daily basis, physically and cognitively, but the worst aspect was feeling alone/lonely every single day and thinking it was because of depression.  I took early retirement on health grounds, changed GP and was advised to stop taking nitrazepam.  I tapered over a three month period.  I became extremely ill, more than you could possibly imagine, and have spent the past three years in bed.  In the early days, I was only able to get to the toilet and to the kitchen for something to eat.  Not able to see anyone, talk on the phone, watch TV, listen to the radio or use a laptop.  Text messages were difficult but the only means of contact with the outside world.  Now, three years later, I can sit in the lounge for half the day and I can walk for a little bit outside.  I am in contact with the outside world again and can watch TV.  I am now off all medication including antidepressants and the feeling of being alone/lonely has completely gone in spite of the fact that I live alone and am too unwell for visitors most of the time.  It was the medication that was responsible.

 

I look forward to reading your article and hope that you can give some mention to benzodiazepines as well as antidepressants.

 

Kind regards

 

[[La...]]

OH MY GOODNESS, THIS IS EXCELLENT, FIONA! Great work! Good for you! Soooooo good!

 

You should be so proud of yourself, Fiona. Your letter is well-written, clear and compelling, and it includes many important links. I'll wait to hear about any updates, and in the meantime, I hope you can tell yourself that your cognition appears to be in excellent shape from where I sit.   

[[lo...]]

Thank you so much, Lapis, for all your interest and encouragement and very kind words.

 

They are all HUGELY appreciated, I can tell you.  :D

 

It was irritating me that the reporter only wanted to know about the A/D side of things so I felt compelled to write.  It will depend on what he wants to focus on and how much time he has.

 

I do believe my cognition is starting to come back to what it was at the end of last year.  This year has been horrible in that respect.

I don't know if it will ever be what it was though, but we will see.  Just have to keep plugging away. 

 

Hugs

 

Fiona 

[[La...]]

I think it's a good call, Fiona, and as a reporter, he shouldn't be ignoring the sizeable issue of benzodiazepine withdrawal everywhere the drugs are prescribed. You'd think he'd be interested in telling the whole story. You've done some good work here, and in my best Scottish accent, I'm saying, "It's grand, isn't it?"

 

But once again, I don't think you can be too concerned about your cognition if you're able to churn out an excellent piece of writing like that. Just keep it up! The brain responds to stimulation, and yours seems to like it. As I write, I'm listening to Dr. Norman Doidge speaking on CBC Radio regarding neuroplasticity and his latest book, "The Brain's Way of Healing". Suffice to say, stimulation is good. The brain CAN improve!

[[lo...]]

I agree, just have to keep stimulating the brain in every way possible.

 

thumbsup: :thumbsup:

[[Te...]]

Fiona, WELL DONE!!!!  :thumbsup:

 

I am so proud of you!!!!!

[[lo...]]

thank you so much, Terry.

 

I am blushing!!!  :D

 

Hugs

 

Fiona 

[[re...]]

http://cepuk.org/2016/10/27/new-york-times-reporter-wants-meet-talk-uk-sufferers-antidepressant-withdrawal/

 

Hope this brings more publicity.

 

Fiona  Well I cant seem to open this link...I think I need to go to computor school for cog fog

[[lo...]]

Neither can I.  It was there before.  I will go and investigate.  >

[[lo...]]

It seems to have been taken down.  Perhaps the journalist has had enough people contact him.  He did leave his phone number and email address.  I will let you know if I hear more.

 

Fiona 

[[be...]]

Exciting developments lately.  Excellent letter Fiona!!! 

 

[[La...]]

Yes, he was probably inundated with calls and emails. Social media works fast!

[[...]]

EXCELLENT job, Fiona, keep blushing.  Awesome.  

I've also been quietly hugging and cheering you on (been hard for me to type much recently).  Thank you so much for all you're doing, including coordinating and sharing all this flurry of activity for us, much appreciated.

 

I think possibly the ADs are getting the most attention because they're far more "sexy" than benzos right now.  It's fabulous how the cat's now being let out of the bag regarding the ADs because, as we all know, they're handed out like candies, a panacea for any/all ailments, mental and/or physical.  The concern, though, is what will be its replacement?  Drs are still going to need something to get the "problem patient" out of their offices.  I fear it will be the APs now as it's already starting to go that direction, how many people are taking extraordinarily harmful drugs such as Seroquel etc. purely for insomnia?  We see it right here on BB.  It's criminal.  Gabapentin seems to have become a cure-all as well.  And what are the chances that Drs will begin to prescribe more benzos as a replacement for the ADs?  It's worrying.

 

So, the short version - Yes, I agree, it would be such a lost opportunity if the focus is on ADs and not the whole story.

 

Another thought.  I'm not a fan of the PDD label (Prescribed Drug Dependence).  It's too soft, in my opinion, and likely carefully chosen to protect the prescribers and others.  I'd have liked to have seen the word "Involuntary" in there.  Which segues to my agreement with others that, even with all these great documentaries and media publicity, I didn't feel they were hard-hitting enough in clearly spelling out in baby language *HOW* a person's *BRAIN/BODY* becomes *PHYSICALLY* dependent.  The word "addiction" was used far too often for my liking.  No matter how you spin it - and to those who feel we're playing emotional semantics - the average person on the street associates this word with recreational drug seeking behavior.  They just do!

 

Thanks so much again for all you're doing, Fiona.  You da best.

 

PS:  You did notice my cat out of the bag idiom, didn't you?! 

 

PPS:  Hmmm, yes, the page has been taken down, I was able to click on it earlier.  I wish I'd left my browser open. 

[[La...]]

I quickly made a Word Document with the CEPUK post about Ben Carey of the New York Times. My guess is that they took it down for a good reason (e.g. enough people found for the interveiws), but his contact info is bencarey@nytimes.com . I think he's also on Twitter here:

 

https://twitter.com/bencareynyt?lang=en

 

[[lo...]]

Thanks benzohno, abcd, Lapis.

 

I have just had a reply from Ben Carey - he said he is covering SSRIs first and then will cover benzodiazepines.

 

He is going to get back to me.

 

I had a look at the New York Times and found one of his articles. 

 

http://www.nytimes.com/2016/08/09/health/psychiatrist-holistic-mental-health.html?rref=collection%2Fbyline%2Fbenedict-carey&action=click&contentCollection=undefined&region=stream&module=stream_unit&version=latest&contentPlacement=4&pgtype=collection&_r=0

 

I don't think that sort of discussion will advance things very much but he may choose a different approach.

 

The PDD label was used by the All Party Parliamentary Group and by the British Medical Association so we are using it to avoid any confusion.  Personally, I don't mind too much as long as we get action by the profession and the politicians.

 

I think we are a very, very long way from reducing A/D prescribing.  At the moment it continues to increase, year on year.  It took decades to get benzo prescribing down in the UK.  I won't live long enough .....  >

 

Hugs

 

Fiona 

[[La...]]

Good! If he's going to do two articles (or more) rather than one on the topic of over-prescribing, then that's great. We'll take it. It's a large topic, and it definitely warrants more coverage.

[[be...]]

Can't read the article right now, but so glad to hear he'll be covering benzos Fiona and that he'll be talking to you.  Very much appreciate the updates and all you are doing! 

 

[[Te...]]

I'm going to write to Ben Carey. Thanks for his e-mail address, Lapis!!! Maybe if he get inundated with mail, he'll realize what a terrible medical disaster benzos are.

[[Ph...]]

Great email, Fiona.  Another potential crack in the wall.

[[lo...]]

Thanks, everyone. 

 

Fiona 

[[be...]]

Hi Terry,

 

I'm following in your footsteps again and am doing the same right now.  I keep revising that letter of mine and it just gets longer and longer.  So hard to write this thing with a busy brain and such a long jumbled history and the personal that is so hard to put into words.  Anyways, doing it.  Thanks Terry for writing him.