An attempt at redress? The Sun feature a story on ME... and recovery...

[CJB]

Well good for him.

But I'm a little confused about the blood tests. Aren't they always stable?

FWIW I haven't recorded an album but I do enjoy recording.

Hasn't made a blind bit of difference to me.

Exactly what I thought. WHAT blood tests? Please do tell. A diagnosis of ME is generally made because the blood tests come back aggravatingly "within normal range".

Whatever, good for him that he's regained his health. I know this is cynical, but I don't put anything past people these days who want to self-promote. Bet he sells plenty of albums. :victory:

 

[drjohn]

PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

Sun Letters.

Since there is no universally agreed diagnostic test for M.E. (Myalgic Encephalomyelitis), it is not possible to say with certainty whether Ben Linus ('Husband's illness was a sign for me to offer hope to others', Sun Woman, 8 February 2012 -- http://www.thesun.co.uk/sol/homepag...fer-hope-to-others-with-messages-of-love.html) had it, rather than, say, career/lifestyle burnout or depression, which is not a prerequisite for M.E.

If that were the case, his wife, Starling's offer of hope could be the worst possible message for those who do have M.E. Hard knock experience and research shows that talking (Cognitive Behaviour Therapy) is disappointingly ineffective and exercise can make things irrecoverably worse. If they worked, the same numbers would not remain ill for decades.

Good for Ben but we must be sure that we are talking about the same illnesses here,

Yours sincerely
drjohngreensmith@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org

 

[drjohn]

Saw your comment under the article, Min. Well done, I wonder if they'll let mine through.

 

[anniekim]

This story was in their local newspaper as well. Two people in the comments section said they are known con artists. I appreciate this is only hearsay but interesting nonetheless....

Edit: oops, see someone has already shared about the comments saying these two were con artists. Apologies for repetition

 

[Calathea]

Well, I for one am thrilled to hear that hobbies will cure ME, and perhaps the NHS will fund increasing my fabric stash to this end? Although it is quite bewildering how quilting, which does indeed bring joy to my heart and mislaid pins to my floor, has had no effect on my health other than to set off calcific tendinitis in my shoulders and RSI in my hands when practised with too much enthusiasm.

I'm still snorting with laughter at the idea of someone severely ill with ME being able to hop up and record an album. And at the idea that the most useful thing you can do to help people with ME is to stand around waving vaguely uplifting placards, rather than, ooh, I don't know, fundraising for biomedical research or something else trivial.

 

[SOC]

Well, I for one am thrilled to hear that hobbies will cure ME, and perhaps the NHS will fund increasing my fabric stash to this end? Although it is quite bewildering how quilting, which does indeed bring joy to my heart and mislaid pins to my floor, has had no effect on my health other than to set off calcific tendinitis in my shoulders and RSI in my hands when practised with too much enthusiasm.

I'm still snorting with laughter at the idea of someone severely ill with ME being able to hop up and record an album. And at the idea that the most useful thing you can do to help people with ME is to stand around waving vaguely uplifting placards, rather than, ooh, I don't know, fundraising for biomedical research or something else trivial.

Love your sense of humor, Calathea!

 

[drjohn]

There are 4 or 5 good comments under the original article, as I type this. Nothing really stupid and no one trying to hijack it, so far. And The Sun approves comments making it less likely for such to get through. Now, wouldn't this be the best chance ever to have a large number of well reasoned, articulate, points, demonstrating that we are a cross-section of "normal" people, who happen to be ill, as opposed to the thuggish, bullying, bigots like Rod Liddle? - Much better than anything the newspaper or PCC could ever do --- I leave you to slug it out here, preach to the converted and get nowhere, or tell the general public what it is really like. Not a difficult choice, I think. While you are at it, copy the same to the Letters page, letters@the-sun.co.uk A heavy postbag could lead to a letters special, or follow up. Or watch him do it all over again

 

[allyb]

Interestingly, given the strangeness of the alleged 'recovery' there are claims under the Oxford mail's site's "Mum's city centre messages offer inspiration" that this pair are really alleged con artists Steven Pitcher and Star aka Shelly Pitcher who were behind the failed 'Rock Star Lottery' in which people allegedly lost money.

http://www.oxfordmail.co.uk/news/9488070.Mum_s_city_centre_messages_offer_inspiration/

http://www.ukbands.net/thread.php?id=14837

Ever the optimists, my daughter and I looked up Starlings /Blog/ website

http://www.heismyhero.co.uk/p/about.html

A fabulously broadcasted account of each day in her campaign (Since 1st Jan) to enrich the lives of others with her placard quotations, what a saint!!!!

I could find no mention or reference on the site regarding M.E.
Actually there was one ABOUT ME............but before you go rushing off and clicking, its actually ABOUT HER (Starling) in keeping with the rest of the website. And of course you can buy the Album.

There once was a man with ME
Cured by recording a CD
To call this a miracle
May be argued satirical
As convincing as GET/CBT

A little light humour.... is my way of coping
allyb

 

[Nielk]

At first, when i read the article, I made fun of it and thought that it's one big joke but, after some reflection and reading from some of you that this pair are known con-artists, I am getting very angry!

I get the stunt part of the wife to try to promote her husbands albums but: WHY PICK ON ME AS A DISEASE THAT YOU CAN JUST SNAP OUT OF IT IF ONLY YOU HAVE THE WILLPOWER?

It's a public defamation, betrayal and treachery while trying to represent themselves like they are part of our diagnosed ME community.

There should be laws against this!

 

[Calathea]

If it can be proven to be a scam, I was wondering whether another newspaper could be persuaded to pick it up and report it as such. But of course then it'd just be another bloody article about those benefits scroungers who are faking illness, and it'd make things worse. We can't win, can we?

 

[Min]

The Linuses formerly the Pitchers?


http://fubar.com/shellypitcher

 

[Min]

http://www.bemuso.com/musicdiy/gettingstartedwithdiymusic2.html

One example from 2006, The Rock Star Lottery publicised here on BBC News, turned out to be a con and a great deal of money went missing

 

[Holmsey]

I'll try anything to get better..

Sing...

Oh please dont cry for ME, oh please dont you cry for ME,

I may be stuck in bed, but they say its in my head,
so please dont cry for me.

If I could only stay awake then I would give myself a shake,
so, please dont cry for me.

Because they wrote it in the Sun that ME's just a bit of fun
so, please dont cry for me.


Oh please dont cry for ME, oh please dont you cry for ME,


My wifes gone down the mall, shes really having quite a ball,
so, please dont cry for me.

She has to sing this song the whole day long
so, please dont cry for me.

Because Im really not in pain, Im just a teeny bit insane,
so, please dont cry for me.


Oh please dont cry for ME, oh please dont you cry for ME,


The moral, well theres none, its just all about the Sun
Who for a little kiss and tell will pay exceptionally well.
so, please dont cry for me.

Because a con well done can be both fruitful and fun,

Soooooo, Please dont cry for ME.



Brought to you by the sponsors of ME/CFS, the illness that keeps Getting.



Nope, hasn't worked, I'm still ill.

 

[allyb]

Beautiful Holmsey....... so sorry youre not cured; maybe you just havent sold enough copies. If youve any strength left, what about an encore???


Buy the Album, support ME, buy 6 and get one free
So please dont cry for ME

ME has changed my life, brought us fame thanks to my wife.
So please dont cry for ME

The next will be TV, to tell of my ME and promote my new CD
So please dont cry for ME

We could start a lottery for ME and I could be the new trustee!!
So please dont cry for me.

Mauritius, sand & sea, sporting a little goatee, spending my rupee
So please dont cry for ME. :tear::tear:


What saddens me is that this story in the SUN will have reached a huge target audience and yet Voices From The Shadows, DVD, portraying the genuine suffering and plight of ME patients, it seems is unable to get any coverage, despite being accredited with Audience Favourite International Documentary Award?
It's just not right.

 

[taniaaust1]

Thou the moral of the story is poor eg live your dreams and you may get well from this, which is something we certainally dont want the general public to be believing about the illness. I wouldnt thou go and say this guy didnt nor never had ME. I got a lot of that when I went throu a remission for a few years, people stopped believing I'd ever had this illness.

I myself did fit the canadian consenus doc criteria (both before and after the remission when I was back very ill again) and also meet the new International consensus definition of the illness currently.. (as well as having many actual test abnormalities which are the common ME ones).

Dr Cheney also talks about there being remission in some.

There is always going to be some which just improve at a coincidental time... I hate saying this but it may just be a remission and he may well end up near as bad as he was originally.

I wish this guy the best and really hope he stays well. (and I didnt make an albumn to become well .. it just happened with very good pacing.. trying to avoid crashes over a long time and doing aggressive bed rest.. the very opposite to GET!!).

 

[Holmsey]

people stopped believing I'd ever had this illness.

I myself did fit the canadian consenus doc criteria (both before and after the remission when I was back very ill again) and also meet the new International consensus definition of the illness currently.. (as well as having many actual test abnormalities which are the common ME ones).

Dr Cheney also talks about there being remission in some.

AllyB, superb, still chuckling.

taniaaust1, I'm with you on this, I don't bite anymore but it does annoy me when there are declarations in threads that someone simply didn't have ME just because they now claim to be recovered. I have absolute faith in the body's ability to overcome given time and the right conditions.

At the end of the day we're saddled with a name tag chosen by the medical professionals who confess to not understanding the illness and even sympathetic studies appear to suggest we may not all have the same illness. Given those facts it's a bit disingenuous of anyone to declare their ME is more ME than anyone else's (CCC withstanding).

My first introduction to ME was when the wife of a younger member of my rugby team was struck down in mid twenties, she was a district nurse who went from highly active to being pushed around in a wheelchair within months, but two years of being bed bound and something changed. I knew her well enough to know it wasn't the life she or her husband wanted but rather one forced upon them by circumstance, and when I heard she was getting better I was delighted for them.

I'm pretty sure there was nothing by way of treatment back then (if you can call CBT or GET treatment), and I certainly don't recall mention of anything other than bed rest being applied, but two years latter she was back functional and trying to rebuild her life. I've heard it said that she's still not right but anyone looking on wouldn't know that, to my mind she's in a long remission I'm guessing where the body has regained some control over whatever the underlying cause is, viral or immune most likely.

Point being I'd argue with anyone who tried to suggest she didn't have what I've now got, I think some of us are lucky enough to regain almost total control, some like yourself and I'd have to say myself, who get part way there and others who through severity or bad luck languish in it's grip or worse, spiral down.

But keeping it light, I don't like the Sun, I don't like con artists and I find the placard down the mall thing a bit creepy, so....all together for one last time,

Oh please don't cry for me.

 

[alex3619]

I would just like to say that if someone has recovered from ME, given how rare recovery is, that is cause for rejoycing, for a party, not to condemn them. I do understand how some of this arises from the issue that misdiagnosis is common, and some who recover may have been misdiagnosed, but that is not their fault either. If they have been misdiagnosed, then they have been mistreated by the medical profession. It is still a good thing when someone recovers, either way.

The misreporting that goes on with the media and ME is another problem entirely. I think we should be angry with the media if they don't bother investigating and write biased stories.

Bye, Alex

 

[Enid]

I think some control of whatever the underlying cause is a very pertinent point Holmsey. Years ago a family friend went down with severe ME. Recently I hear he is better, much more able and to any observer well BUT he said "you have to live with it" so not fully well. Now what is remission - a grade perhaps.

 

[Holmsey]

I think some control of whatever the underlying cause is a very pertinent point Holmsey. Years ago a family friend went down with severe ME. Recently I hear he is better, much more able and to any observer well BUT he said "you have to live with it" so not fully well. Now what is remission - a grade perhaps.

I certainly think we have to be open to improvement if not cure, and not just dismiss improvement as miss-diagnosis. From the minute we become ill, with anything, the body starts trying to rectify the situation and there's no science yet that can out do the body in that process. I remember one GP telling me that medicine is pseudo science, he told me that some cells have up to 500 chemical receptors, and operate in tandem with millions of other cells to tiny amounts of 'signatures' of simultaneous chemicals for a very particular purpose. By comparison he said, we identify what one activated receptor does and then flood the body with the activating chemical, he said that's the principle behind drugs and went so far as to say 'it's like using a sledge hammer to crack a nut'.

My own opinion however is that in our case it's the body's attempts to heal that perpetuates our illness, by that I mean I believe the immune system is compromised. It's uncanny how many people who don't know the specifics of my illness will tell me I have arthritis. If it is our immune system then that's a real double whammy as I can't imagine a worse illness to have than when the body's mechanism for healing is itself ill.

But then if this is the case it raises some interesting questions, for instance can we influence that healing mechanism by systematically telling the body it's not being attacked (Gupta - have to say it didn't work for me but maybe did / does for others). Or by not adding to the stress during a crash, it's almost herecy, but CBT, not as it's touted as a cure, but as an aid to improved quality of life, to an improved state or higher grade as you put it. I work for an international health insurance company and did 13 sessions of CBT with a councilor who never pretended she was going to cure me but said she could help me cope with the symptoms, and I'd have to conclude she has.

We rightly despair when we're told by the professionals that on the basis they can't find what's wrong then we're not actually ill, we know that to be patent nonsense because we know first hand both what we were like pre-llness, and what we're experiencing now.

By the same token we should not, in my opinion, tell someone they can't influence their illness, that they can't improve until a cure is found otherwise they don't have what we've got, it's probably wrong and even if it's not it certainly doesn't help them.

All this said the only thing that seems to have worked for me is supplementation and living within my limits, but in these I've come to a place which is very much different to where I started, I'm far from cured but as your friend says I've learned to live with it.

 

[Min]

This couple are appearing on the UK "Live With Gabby" show on Channel 5 on 12 March, perhaps to relate his miraculous 'recovery'.

The channel can be contacted here:

http://www.channel5.com/contact-us