Thursday, 19 May 2011

'One Of Us Cannot Be Wrong'

'One Of Us Cannot Be Wrong' is, of course, one of Leonard Cohen's (many) fabulous songs. I've had it in my head since The Lancet published its editorial the other day on the hugely negative patient response to the PACE trial:

...But one cannot help but wonder whether the sheer anger and coordination of the response to this trial has been born not only from the frustration many feel about a disabling condition, but also from an active campaign to discredit the research...


Oh for Jesus' sake, patronise and demonise us some more, why don't you?!

The Lancet received forty-four letters of complaint and published eight. It did not publish any from patient charities. Here once again are the ones rejected.

Dr Speedy, as always, has a wonderful take on things.

So it goes on, a handful of (biopsychosocial) researchers v. patients worldwide disagreeing passionately on the safety and efficacy of graded exercise and CBT for a neuroimmune illness that has torn up many of their lives.

As Leonard says: One Of Us Cannot Be Wrong.

***Cheney P, Orlando Workshop, International Congress of Bioenergetic Medicine 1999, audio tape #2 (“The most important thing about exercise is not to have them do aerobic exercise. If you have a defect in the mitochondrial function and you push the mitochondria by exercise, you kill the DNA”).

******If you are on FACEBOOK, please take a few minutes to vote for Whittemore Peterson Institute, it desperately needs funding. Nicky has clear instructions on her blog! Many, many thanks. The PACE trial wasted almost £5 million pounds on psychobabble, just think what biomedical gems that money could have unearthed.

**********Oh, it just gets better and better. I had wanted this to be a short post, I am so fucking exhausted with PACE and its fallout. Now we have them telling Professor Hooper that the trial was never about ME but about the much more nebulous 'chronic fatigue'.

Really, these PACE people should come up to Edinburgh and get a slot in the Fringe comedy circuit this August: the blackest medical comedy ever written and performed!

************** Countess of Mar wins award for outstanding services to PWME

16 comments:

Mim said...

These dense patronizing 'experts' who believe they are making balanced statements!

na said...

Hey nmj

Great blog (as always) the only thing i'd question is voting for the wpi to get money for research. It really pains me to say it after all the hope i had in them, but I no longer have confidence in them or their research. I was convinced by them up till this year but every new piece of information since then has added to my doubts.

Best regards from a long time lurker.

nmj said...

Ha, nothing balanced about PACE, Mim.

Thanks, na, glad you enjoy blog. Did not mean for my post to be so sweary, but I am just so frazzled with these PACE people, I really am. Re. WPI, I am not trying to influence who anyone donates to, that is a purely personal decision, was just highlighting the campaign in case people hadn't seen. It seems WPI is not getting a huge response so far though, but I also read people are having problems with the FB app for voting.

Lordy, I need to take a break from ME blogging, I am so burnt out with it - PACE has been leering over us for 3 months now.

Prue said...

As always love your blog and more than understand your anger about the PACe trail. Just hope the blogging doesn't make you worse.

As for WPI, i think even if turns out XMRV doesn't turn out to be linked to M.E (and the jury is still out, apparently there is a big study coming out at the end of the year that should decide once and for all whether there is a link, called the Lipkin study, I think), WPI are still dedicated to researching the pathology of M.E and as such, for me at least, are worthy of support.

It only takes a minute to vote for them. Voting closes on the 25 May. I have voted and have managed to get a few friends on facebook. At the moment a marching band is ahead of us, surely research into M.E is important? Hope this is ok writing this here.

nmj said...

Hey Prue, Your feelings echo my own. A friend with severe ME described herself as 'being agnostic' when it comes to XMRV and I think that is a good description.

Phoenix Rising email below I just received, also suggests CFIDS, you get to vote for five organisations:

*****************************
The WPI - the WPI's discovery of XMRV in the blood of people with ME/CFS has spurred more research and interest in CFS than any other in history. Prior to the XMRV discovery the WPI was doing ground-breaking work in pathogen detection and immune functioning. A recent paper on immune signatures indicated the WPI was able to detect dramatic differences in cytokine levels - a startling finding that could promise much. This summer the WPI will open the largest and most sophisticated ME/CFS clinic in existence. They are a natural choice for people with ME/CFS.

* Vote for the WPI here: http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-fo


The CFIDS Association of America - love them or hate them for their work in other areas its clear that the CAA has funded potentially ground-breaking research work into ME/CFS. The CAA's 'star', Gordon Broderick turned a $100,000 CAA grant into a 4 1/2 million dollar NIH/DOD grant to study the effects of exercise on immune and nervous system functioning. Both Dr. Light, Dr Shungu and Dr. Huber were able to turn CAA seed money into rare NIH grants to study aberrant receptor functioning, mitochondrial problems in the brain and reactivated endogenous retroviruses in ME/CFS.

Other researchers under the CAA's umbrella are doing cutting edge work in Epstein-barr virus, identifying blood vessel problems and characterizing the 'flora' of the largest immune reservoir in the body - the gut. The CAA is primarily a research organization now...if you believe we need more money for innovative research into the causes of ME/CFS - voting for them, in my opinion, is a no-brainer...

* Vote For the CFIDS Association here: http://apps.facebook.com/chasecommunitygiving/charities/561683450-the-cfids-association-of-america
*********************************

The research projects outlined above just highlight the scandal and farce of PACE.

Prue said...

Yes, I have voted for CFIDS too. Thanks for sharing that info. I think it's a shame that not more people have voted, it's a chance of getting some money for bio medical research, which is what we above all else need for this dreaded and much badly maligned illness.

I think agnostic is a good way of describing one's thoughts on the link of XMRV and M.E. I just hope the truth is revealed, be it negative or positive for XMRV.

nmj said...

I know, a couple of clicks to vote could make all the difference! Maybe some out off by 'insecure connection message', I really don't know.

I was just thinking again about PACE: it is unconscionable the way all that money has been wasted in the name of ME research.

nmj said...

http://niceguidelines.blogspot.com/2011/05/mikovits-event-in-belfast-yesterday-was.html

Prue said...

Yes, the five million pounds wasted on Pace could have been spent on some bio medical research that actually could help patients. It's sickening thinking about it, but I suppose it's done and dusted. My hope lies with the Americans and other countries, the situation here in the UK is untenable

Prue said...

Oops, forgot to say, yes, perhaps some people are put off voting because of the 'insecure connection message', shame...I also think it's a shame that patient groups across the world didn't have more notice of the event. Perhaps pleas could have been put out in groups newsletters, although may not have made a difference. Oh well, at least the WPI are doing reasonably well. Thanks for the Mikovits link, interesting...

nmj said...

I think the 'insecure' thing comes with any app, but I am not sure as I hardly use any FB apps at all...

All we can do is inform everyone of the opportunity to vote and HOPE they do!

I was today trying to imagine the excitement I would have felt at a chance like this when I was more recently diagnosed - I would have been shouting from the rooftops, PLEASE VOTE, EVERYONE!

After thirty years, I am more 'reserved', if that is the right word, I guess I am just protecting myself from disappointment. Still, I have done what I can to spread the word and I sincerely hope WPI gets some funding out of this.

sylvieromy said...

I'm voting for WPI not specifically for their research into xmrv but because they seem to have a genuine respect for PWME, and because they seem utterly dedicated to winkling out the cause of ME. I'm sort of voting for their spiritedness, and their outlook on all this. And they've stuck their neck out and publicly slated the pace fiasco.

nmj said...

Damn, I just checked, WPI is no.8 with 6243 votes. Bizarre, because 6000 odd votes is not that great when you consider the number of ME sufferers in USA alone.

I agree, Sylv, you feel if anyone can get to bottom of ME, WPI can.

Still, if the millions wasted on PACE had been allocated to MEResearchUK or Ramsay fund or Invest in ME, we might be a bit further ahead in research here in UK. That's what makes me so angry.

nmj said...

From the Whittemore Peterson Institute Facebook page:

A message from Annette Whittemore .

"As the competition moves along more charities are combining efforts. In the spirit of working together for patients, we're asking for people to use any unused votes to help support the CAA. Many have already voted for both and we thank you. Let's make medical research and patients a priority on this top 10 list for Chase."

---

Links for the two organisations are:

(i) the CFIDS Association of America: http://t.co/VZEd5Pk

(ii) the Whittemore Peterson Institute http://t.co/Ev8j2dP

nmj said...

From CFS Central blog, v good instructions!:
If enough ME/CFS patients vote in round two of the Chase Community Giving contest, they can help ensure that WPI gets the money it needs for ME/CFS research.

1. Go to facebook: http://www.facebook.com
2. Copy and paste this URL: http://www.facebook.com/ChaseCommunityGiving?ref=ts
3. Click the "like" button (to the right of "Chase Community Giving" at the top. If you’ve already "liked" Chase Community Giving, you won’t see the “like” button, and you can skip to the next step.
4. Copy and paste this URL: http://tinyurl.com/wpiround2 Click the big green "Vote & Share" button to cast your vote.

nmj said...

http://www.meassociation.org.uk/?p=6171