Wednesday, November 7, 2007

Fighting for an honest view of CFS

By psychologist Ellen Goudsmit, who's done a lot of research into CFS:

Prof. White asks us to stop fighting him and focus on fighting CFS but he has a formidable history of making life difficult for patients and any colleagues with different views. Has he suddenly changed his mind or is this a case of ‘spin’?

The sympathetic and reasonable attitude shown by Prof. White on You and Yours and  in his reply on Co-Cure is inconsistent with his misrepresentation of the research and views of both patients and colleagues. His record includes trivialising the illness (e.g. references to hypervigilence making normal symptoms appear worse,) and criticisms of  a lay version of pacing which he is now studying as part of the PACE trial (presumably to prove its flaws). This is inconsistent with the kind of patient-centered, objectivity one expects from a sympathetic physician who cares about this illness. It reflects a more subjective, selective approach. That’s what some of  us are fighting. I certainly have no interest in challenging  a perfectly reasonable individual giving an objective opinion.

The emphasis in his descriptions of the illness are recognisably psychiatric. While we all acknowledge that psychiatric conditions have physical effects (as ‘physical’ diseases can have psychological effects), the subtext in all his recent articles is that CFS is psychiatric/psychosomatic.  Moreover, the treatment advocated assumes a psychiatric/psychosomatic  aetiology. He may be against Cartesian dualism, but his articles show  a distinct fondness for dualistic thinking. Thus any virus infection may be a trigger, but I rarely see references to the 30% of patients with evidence of ongoing infection. This is the subset for whom GET might be unsafe. As for proteins in the CSF (Natelson et al), it’s not a finding one tends to come across in the writings of the CBT school. Perhaps because it might give a more balanced view of the literature, and sew doubts in the minds of readers.  Such evidence shows the complexity of CFS, and that requires a different type of treatment the ones Prof. White advocates.

If Prof. White wants us to stop challenging him, he must show more respect for the views of patients and the work of colleagues who  don’t support the CBT model.  We’re only fighting back to stop people being misled.

Conflict of interest. Prof. White has consistently ignored my work on pacing, preferring to give people the impression that there’s only one version, i.e. the one which is largely based on ideas for a different patient group and which he (rightly) tends to criticise as nonsense.

Ellen M. Goudsmit CPsychol CSci AFBPsS

For information on ME and CFS, see: http://freespace.virgin.net/david.axford/melist.htm

 

Monday, November 5, 2007

Took a risk and paid the price

The perception exists that people with CFS are simply "afraid" to do things and need to be coaxed to try to do more.

Nothing could be further from the truth.  When a person with CFS says "I can't", they mean that they have tried and failed, not that they are too afraid to try.  That may be true of people with depression, but cortisol tests prove that CFS is not depression.

I spent yesterday resting in hopes of running some errands today.  By the time I got to the second store, my back was in such spasm that I couldn't bend over to look at things or pick up the bag that I'd set on the floor.  By the time I was through there, the spasms were so bad I could barely walk and I wasn't sure how I was going to get home.

I've had to hand off work to someone else today because a brief shopping excursion did exactly what I've tried to tell doctors it will: left me in immense pain and barely functional.  Yet when I told doctors this is what actually happens, they told me that I'd be amazed what I could do if I tried.  Yes, I am amazed at how bad the symptoms get when I try to do what the doctors say I should be able to do easily, and amazed at how readily they dismiss my first-hand observations and substitute their baseless speculations.

Sunday, November 4, 2007

To Bee or Not to Bee....

Or "Wish I were a Bee"

The respected PBS science program "Nature" had a show tonight about a "mysterious syndrome" which costs the US economy $15B in annual productivity, called Colony Collapse Disorder. They’ve never done a show about the mysterious syndrome that costs as much as $25B called CFS.

There was a long list of possible culprits, most of which could not be proven:

malnutrition (not proven, though some bees had digestive abnormalities)

pesticide (but only some symptoms were present and it was also found among organic beekeepers/farmers who don’t use pesticides)

stress (how much stress could a bee possibly have?!)

cell phones (which turned out to be bad science)

mites (the scientists didn’t see what they should have seen)

parasite (but the parasite they found was present in all hives, not just the CCD ones)

an AIDS-like virus

Governments around the world dipped into emergency funds to pay for research. Penn State called in top researchers from every discipline, including Columbia University’s infectious disease lab. Contrast that to the short shrift given to CFS research. CFS affects people who will live 50 years with the disease, not honeybees that, under the best of circumstances, will live only 30 days total.

Researchers found a "whole array" of problems with the bees they studied, including the same fungi that develop in a human with a suppressed immune system (e.g., someone with CFS or AIDS).

In studying the DNA taken from affected bees, they found the Israeli Acute Paralytic Virus (gee, does the concept of an acute and paralytic virus ring any bells with my fellow CFS sufferers?) and PBS ended the program with the assurance that "scientists are now working to understand and cure the virus".

Meanwhile, a million CFS patients in the US alone are left to fend for themselves. No government in the history of CFS has used "emergency funds" to pay for research – the pittance assigned by our own government for CFS research has repeatedly been misused to research other diseases. After an audit revealed that, and the amount was ordered to be replaced in the CFS budget, it was found that the money was again diverted to other diseases that the researchers were more interested in.

Where are the "top researchers in every discipline" searching for a cure for the human disease that costs the country even more in productivity? While governments are spending their emergency funds on researching bees, most of the CFS research done in the US has been funded by the patients themselves. Thanks to a few who come from well-heeled families, there’s been research done that could not have been funded by the majority of patients who are unable to work but don’t receive any government Disability benefits, either, and therefore can’t even spare $1 to put toward the research that might get them back to work.

Maybe if we were cute and furry like the bees?

Commentary on Jobs


Thanks to Horace for letting us know about Frank Field's proposals for our
welfare system
(link below my signature).

He's been known for "thinking the unthinkable" (I say "unworkable") for
years. It looks like we're in for another round.

If anyone has a letter in them, the e-mail address is
dtletters@telegraph.co.uk

Cheers
John


Daily Telegraph Letters.

Frank Field never learns from his previous experiences about welfare reform.
Once again, he is thinking the unworkable, for which he was sacked last
time.

The people whose hearts will sink on hearing his blunt instrument proposals
(Foreigners get jobs - not welfare claimants, Daily Telegraph, 3 November
2007) are those who are chronically sick, on disability benefits, for whom
it is a case of can't not won't work. You don't enable ill people to work by
imposing a time or number limit on benefits. Those who, thereby, become
excluded still can't work and they become even poorer. You leave them with
the options of charity, black economy, crime or suicide.

Successive governments have said there is security for those who are
genuinely ill but there's no limit to the number of times a person, already
found to be medically unfit for work, sometimes several times before, can be
put through the mill of a medical review, again and again, by a doctor,
unfamiliar with their case, on fat fees. More than two-thirds, erroneously
judged fit for work this time, have their benefits restored on appeal, by
lawyers on fatter fees. Now Frank Field wants to remove any remaining
safeguards by effectively privatising the welfare system, for speed and
efficiency; no mention of care or security for claimants.

It would be a tragedy if any real reduction in numbers of disability
claimants came about as a result of decisions to take their own lives, out
of despair at Frank Field's increasingly merciless obsession.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org

Original article at:
http://www.telegraph.co.uk/opinion/main.jhtml?xml=/opinion/2007/11/03/do0304.xml



 

Update from Jane

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THE ONE CLICK GROUP

www.theoneclickgroup.co.uk

Email mail@theoneclickgroup.co.uk

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THE ONE CLICK GROUP

www.theoneclickgroup.co.uk

Email mail@theoneclickgroup.co.uk

<!--[if !vml]--><!--[endif]-->READ THE NEWS ON ONE CLICK
http://www.theoneclickgroup.co.uk

4 November 2007

 

This document contains live links highlighted in blue.

The Amazing Legal Journey For ME/CFS Patients

One Click Group Director Jane Bryant writes:

Dear All

We have all been on an extraordinary and momentous journey together since the One Click health advocacy pressure group launched the Fighting Fund Appeal to challenge the appalling CFS/ME NICE Guidelines by Judicial Review three short weeks ago. In that unbelievably short space of time, we have all together raised £11,449 in pledges total this Sunday to coalesce and fight thisinjustice.

It has been truly awesome, what has been going on over the last few days; the extraordinary world wide chord touched. This is particularly amazing because so many people labelled with ME/CFS find it so terribly hard to absorb and retain information because of neurocognitive catastrophe of this dreadful illness. Yet they themselves have been on to us in their droves, as have their friends, parents, grannies, support organisations, doctors - the list goes on and on.

Many are finding this very empowering. At last, something concrete is actually trying to be done. We are all so touched that you are all helping to make this happen. This Judicial Review has become the quintessential action by the people and for the people.

On One Click we would like to thank every individual and many organisations from <?XML:NAMESPACE PREFIX = ST1 />Australia, America, Canada, France, Germany, Italy, New Zealand, South America, Switzerland and many others for their overwhelming support.

One Click Group Director Jane Bryant says: "What has transpired over the last three weeks has been the most moving and arguably most important experience of my entire life. From a small Judicial Review stone carefully targeted into the internet pool, the ripples have flowed around the entire world to become a veritable tsunami. I have never seen anything like this. It is legal history in the making. Thank you all."

This legal attempt to bring the psychiatric lobby to task has inevitably been met with some truly worthless attempts to destabilise the Judicial Review campaign by circulating entirely false, vicious, libellous and defamatory allegations against this initiative.

This abuse, together with One Click communications being cut and interfered with from time to time is par for the course. The psychiatric lobby and their known hangers on, some of whom come in the most surprising vested interest charity guises, are simply terrified that at last, the psychiatric abuse of ME/CFS labelled patients has the possibility of being aired in a court of law and stopped, with all their vested interests draining away like the damaging scum that it is.

This malfeasance has been passed on to the One Click lawyers where it will form part of the record of this case. We would not be doing our jobs properly if the UK psychiatric lobby and its hangers on did not attempt to stop this case, their fear is now so great. One must expect nothing less. Ironically and amusingly, this psychiatric lobby activity represents a glowing tribute to the success of this campaign.

What has been so extraordinary for me personally is what people have written to One Click, as they make their pledges to legally challenge the CFS/ME NICE Guidelines.

Obviously, having a son labelled with ME/CFS for the last six years since the age of ten, I knew only too well what was being done to you all and to my family. But never have I witnessed in all the many years of running One Click, the simply devastating, factual and concise accounts that have globally poured out on what is being done to you all around the world as you struggle to survive with ME/CFS, against every possible medical and financial block put in your path. I salute you my friends and I am humbled by your pain. All together, we have now been given the opportunity to do something about this that will form part of court record.

I would urge all those who have not yet pledged to the Fighting Fund to please do so now as our deadline is moving swiftly upon us.

For all those who have already pledged, we would request your consideration of pledging further, but only if you can afford it and have enough left over for your food and your needs.

So many of us know what it's like to eke out the most miserable existence in death's waiting room; attempting to survive on often denied government 'benefits' with career wrecked and home lost; scrabbling for food and a place to live whilst being denied proper medical care and investigations even though the World Health Organisation classifies ME/CFS as a neurological illness (WHO ICD.10 G93.3).  Just think what this is doing to our children.

Together from around the world, we have the opportunity to make a concrete, tangible, taste in the mouth difference. I predict that we will not find another so perfectly crafted legal opportunity in my lifetime to challenge the psychiatric lobby abuse of patients, as we have put before us today.

Because of this, I will leave no stone unturned and will continue to work myself into the ground, as will others, to help make this legal challenge happen.

I would ask you all to please join me and my family in your thoughts and your prayers around the world this Sunday for all ME/CFS patients and the many others labelled as such. The positives over the last three weeks have profoundly affected my spirit. We have been given the legal opportunity to change the fate of these patients. As is written, God helps those who help themselves. With your help - and only with your help - we can do this.

Thank you so much for listening.

Very best wishes

Jane Bryant
Director
The One Click Group
www.theoneclickgroup.co.uk




For further information:

How To Donate - Legal Appeal Instructions
(http://tinyurl.com/39cgjm)

Jane Bryant - Legal Appeal Personal Statement
(http://tinyurl.com/35bqgk)

The Mental Health Movement - The Persecution of Patients
(http://tinyurl.com/55e3f)