My informal study has now been published.

[xrn]

Hello all.

My informal study has now been published in the Journal of Independent Medical Research

Cable J: Adverse Events of Statins - An Informal Internet-based Study. JOIMR
2009;7(1):1

*http://www.joimr.org/JOIMR_Vol7_No1_Dec2009.pdf

It is exciting for me because non-clinicians do not usually have access to medical publications. It also completes the initial work I which I had set out to complete nearly 3 years ago. I was a regular contributor to this site then and I was moved to do something concrete after reading the stories of individuals here on this site, provided by Spacedoc. Thank you Spacedoc!

The e-Petition is still running here: *http://www.gopetition.com/online/11757.html

...and it still needs your signature and your 500 word commentaries if you have not signed. This can and will make a difference. Thus far, in the last couple of weeks since the report was finished, it has been sent to every single government agency, some transnational agencies such as the World Health Organisation and the European Medicines Agency.

It has also gone to several medical journals and medical organisations and a variety of web sites, research workers, each of the petition signatories, public health officers, politicians, newspapers, radio and TV stations and organisations for single conditions such as ALS and even presidents.

I would like to thank everyone who has contributed to the statin e-Petition and for the people who have not, I would like to request that you go along to the petition site and contribute your signature and your story.

Kind regards,
Jeff (aka xrn)

[Allen1]

Congratulations, that's great news Jeff,

it is also good to see that Prof Marshall is open to good reasoning and is aware of the real possibility of reactions caused by Statins, he mentions a couple of articles that he has brought to the attention of the FDA and the Lancet that your research seems to back up and show the reality of his past reports.

I do still read the posts here but rarely answer them now as my concentration ability is abysmal lately, I hope that this study you have written opens many more Professors, Specialists and even General Practitioners eyes to the reality of adverse reactions due to Statins and all the other drugs that do so much harm to us all.

All the best for Xmas Jeff and all the other folk who read this

[xrn]

Hello Allen1,

Thank you for your congratulations. It is very much appreciated. I am pleased that Professor Marshall could see some value in the report. It was a long time coming (I have written to rather a lot of people during the time that the ePetition has been running) but it adds a veneer of respectability that qualified medical doctors will now have to note.

It may well open other doors for me in the future (in one case, The Daily telegraph and Dr James Le Fanu) are now seeing my work as worth publicising. I have long since retired from clinical work and this sort of access to professional publication was as a good as closed to me. Professor Marshall has just opened the door again.

I have sent the document to the organisation that deals with sending stuff to the Primary Care Trusts in the UK, the bodies which oversee the work of GPs and employ them. The organisation is yet to respond but I cannot make it clear enough that if all statin damaged people gave a copy of the report (pdf file so it is an easy download) to their personal medical practitioners, the opinions will change.

Greetings of the season to you too, Allen1. I hope that you recover more of your health in the New Year. There is a closed support group for the sufferers of statin side effects (who live in the UK) and if you write to me with your e-mail address at the following address, then I will put you in touch with the group because the discussions are UK-centric and may be more relevant to your own situation.

Kind regards,
Jeff (aka xrn)

The following e-mail address is mine and that is where to write if you are interested in being a member of a private UK group. Take out the words in brackets and substitute them with symbols.

belatedpixels (at) googlemail (dot) com

[Allen1]

Hi there Jeff,

my granddaughter has told me that they discussed Statins at school again last week, I don't know the in's and out's of the discussion but side effects were also brought up and she mentioned some of mine and how they effect my day to day life and the effect it has on close family seeing what can happen first hand. It certainly looks like people are starting to take notice and possibly realise that there is a reason why their friends or relatives have all those strange problems that they never used to have. Now they may be able to find the culprit that caused the problems, this is all due to sites like this one, the media bringing it to the attention (good or bad) and to the work you have done to get the problems to be recognised by the people who can change the way things are done.

All of us here know about the odd up days and the many down ones since statin therapy, there is often no obvious reason why one day you can feel almost normal (unless you try to do something) and the next you are a mess, in pain and unable to think properly to say the least, we also know that those bad days can last a very long time.

I suppose that I am fortunate in that my family accept that it was the statins that have altered me the way they have, how many other folks have relatives and even doctors who do not support them and probably think they are attention seekers or worse. I must admit that my doctor is uncertain about the whole statin connection, hopefully your work will carry through and show everyone the reality of the situation and lead to Q10 and L-Carnitine becoming available on prescription and Statins removed.

Thanks for the offer for the support group in the UK, I have no doubt that it would be a benefit to me or any of its members but it is places like this that the experience of such members could probably help those who have newly found the cause of their health issues and don't know what to do for the best (that doesn't sound right but I think you know what I mean)

All the best,
Allen

[xrn]

Hi Allen,

I understand what you mean and you must do whatever you are most comfortable with doing. I speak to a lot of statin-damaged people in the UK and generally speaking, I try to ensure that information passed from person to person is both up to date and accurate.

I hope to get the UK government to recognise that statin damage is inevitable and that supplements such as CoQ10 and L Carnitine are both prescribed and freely available to the people who have been irreparably damaged by statins.

Getting publicity is important and I am working with 6 different media outlets at this time. Hopefully that will bear fruit very soon. The Daily Telegraph will mention my report on December 208th in Dr James Le Fanu's column on health matters.

I hope you have a better year in 2010

Kind regards,
Jeff (aka xrn)

[Allen1]

Hi there Jeff,

my previous comments were not intended to belittle or snub the support group or any close or even closed community that relates to health issues, I believe that they are a necessary and practical means of both finding out what is new as well as hearing first hand what has helped to ease symptoms and probably start new friendships with people who have been affected in a similar manner to their own problems.

The benefits of those support groups is also what I found on this site, when I eventually asked for advice, Adec and Ray Holder were there for me. Later on Brookes and Brian plus many others who had experienced the same or similar problems and who spoke mainly in plain English.

Sadly it appears that peoples health issues or other commitments etc have taken its toll on those who used to be supportive to others on this site. I know in the last year it was also darned hard work trying to make sense of some of the posts where even a doctor would struggle with the abbreviations and words used.

That is what I meant about the people in the support groups and their experience, this seems to be in short supply on places like here on this site at the moment, just take a look at the posts or maybe the lack of.

It is good to know that there are people like you who know when to use the correct names and use them in the context they were designed for. You are doing a fantastic job and I am proud of your achievements and pleased that you didn't give up on this fight even when all the odds were stacked against you as in the pharmaceutical industry and even most doctors.

The way things are going it looks like there will soon be a lot of explaining required from those who thought they were above the Law but that is something else to look forward to

I also wish you every success with the :-

"I hope to get the UK government to recognise that statin damage is inevitable and that supplements such as CoQ10 and L Carnitine are both prescribed and freely available to the people who have been irreparably damaged by statins."

Buying them is one massive drain on a limited income and they do make life a little easier, you tend to realise just how much when you run out after a couple of days

All the best for 2010 and lets hope everyone's health improves and that Statins are discontinued and that Bl**dy Benicol advert disappears ie Lets NOT talk about Cholesterol

Bye for now,
Allen

[gotts1936]

Howdy Jeff,
Excellent job. I have downloaded and will give a copy of your report to my primary doctor. My primary Doc says he is concerned about statin drug side effects, but US drug companies are very powerful and the majority of doctors are scared to death of them.

Again, thanks for your effort.

gotts 1936

[xrn]

Hi Allen,
No offence taken.

I think that responding to any internet forum is tough when you have been statin damaged. Fatigue and general inability to do much without feeling worn out in addition to the memory loss and cognitive issues, tends to prevent people from making as much use of internet sites as they would wish.

The proliferation of self-help sites also confuses the picture and it can be very difficult to determine whether the site is genuine, as spacedoc.net clearly is or whether it is just a drug advertising machine provided by pharmaceutical companies. Support is a full time job and I think it is important to inform without making assumptions about what people really know. I cannot believe the amount of nonsense that is being pushed when looking at various sites. I do what I can to correct lies and sales talk.

The attempt to make supplements available on the NHS will only be possible once the health authorities recognise that their policies have hurt innocent people. I don't particularly care whether it was by accident or design. I do intend to see that the relevant authorities address the issues which are the direct result of their conduct.

I am going to tackle the advertising standards authority and those lying advertisements and excitement over lower cholesterol numbers. If the ads do not tell the truth (they don't) then they should not be aired to the most vulnerable members of society (obesity and low self-esteem) in an effort to sell expensive and useless (at best) and harmful (at worst) muck.

Kind regards,
Jeff (aka xrn)

[xrn]

Hi gotts,
Thank you for letting me know. This is good news because it will assist the viral spread of my report. It also gives a clinicians less possibility of avoiding dealing with the issues and that has to be good news.

Enjoy the holidays.

Kind regards,
Jeff (aka xrn)

[Allen1]

Hi there Jeff,

"The Daily Telegraph will mention my report in December (Dr James Le Fanu's column on health matters)."

your results were mentioned in the article about so called expert advice where the swine flu fiasco starts the article leading up to results from your report that back up what he has previously stated in the past about statins.
I left a comment but it has not been added at the moment but the article and comments are worth reading.


*http://www.telegraph.co.uk/health/healthadvice/jameslefanu/6839432/Dr-James-le-Fanu-swine-flu.html?state=target#postacomment&postingId=6923907