Discussion in 'Action Alerts and Advocacy' started by shrewsbury, Jan 16, 2010.
me agenda posted this to co-cure from the ME Association's site:
this excellent letter, or an edited version of it, was published in yesterday's Daily Mail:
"Is M.E. a genuine illness? poll in "British experts say ME virus is a myth", Daily Mail, 6 January 2010 #5
As an M.E. sufferer of over three years, I wish to protest most strongly at your promotion of a poll questioning the legitimacy of my illness (Is M.E. real?).
M.E. has been listed as a neurological disease by the World Health Organisation since 1969 and, as my diagnosis came from my GP, one would assume she knew what she was talking about and would not diagnose anybody with something that did not exist.
A year ago I lost my disability benefits solely because of the bias and misinformation held as `truths' by some doctors who work for the DWP - this was despite having physical tests results showing massive cell damage going on inside my body and providing irrefutable evidence of the physiological nature of my disease which is responsible for the overwhelming pain and fatigue from which I suffer.
An entire industry has been built up on the basis of denying the reality of M.E. as a disease, all based around vested interests of the insurance industry and certain psychologists who are in the pay of that industry and the DWP. The recent discovery of the retrovirus XMRV in the blood of sufferers is about to bring their house of cards toppling down, hence their hastily bodged pseudo-replication of the WPI (Whittemore Peterson Institue) study which discovered the link with XMRV. I think you will find the study put forth by the Behavioural unit of King's has not replicated the stringent protocols of the WPI's study, and therefore any conclusions forthcoming from their `research' are absolutely worthless, being totally incomparable to the original findings of the WPI. That they were rushed through, and rushed to publish, is evidence of the panic taking hold amongst those who have built lucrative careers out of condemning extremely sick people as `malingerers' and the unworthy sick; the end of this disgraceful situation is nigh. No longer will the government be able to justify spending a big fat zero on biomedical research into my illness, leaving it to charities and individuals like myself to fund research into finding a cure.
UK psychologists can paddle as fast as they may, they cannot resist the turning tide of science, which will sweep them and their invalid ideas out into the sea of the outdated and unempirical. Don't give these ideas any credence with your ill-conceived poll.
And so they should !
Thanks for posting that Islandfinn and what a great letter in Min's post too.
Also from the M.E.A website today:
Nursing Times online poll: Is the Daily Mail bad for your health?
The above poll can also be accessed here, and comments to the article left by those who register;
"If you need health advice, Beyond the Bedpan recommends the Daily Mail. Provided, of course, that you are not making it up.
The Daily Mail takes pride in its health coverage, and rightly so. Just ask the thousands of children saved from autism when the paper championed an alleged link between the neural disorder and the MMR vaccine.
And we do mean championed. The MMR-autism link went on to be categorically discredited. But The Mail battled on, brushing aside the petty protests of scientific evidence to bring its own lucrative version of truth to the masses.
Even a claim by the Media Standards Trust - that the anti-MMR claims were increasing the chances of a measles epidemic and putting childrens lives at risk - failed to dampen The Mails righteous fire.
More recently, the paper questioned the safety of the human papillomavirus virus (HPV) jab when a 14-year-old girl died shortly after being vaccinated. And the paper continued to question it even after public health officials said the girls death had been caused by serious underlying health conditions, and not by the HPV vaccine.
So it should be no surprise to learn that that the Mails sympathies extend to people suffering from myalgic encephalopathy (ME). The condition causes chronic fatigue, muscle and joint pain, sleep disorders, gastric disturbances and poor memory. The symptoms are often debilitating enough to prevent sufferers from working, going to school or generally leading normal lives.
And what words of advice would our favourite health correspondents have for people suffering this debilitating symptoms? It was summed up nicely in a reader poll: Is ME a genuine illness?
In other words, not only do we know nothing about your condition, but we think you might have made the whole thing up.
Shocking stuff. So shocking, that even the immovable Mail saw fit to remove the poll and apologise. An apology that neatly blamed the fiasco on an unnamed junior member of staff, and couldnt resist raising a suggestive eyebrow by reminding offended ME sufferers that there is still a great deal to learn about what lies behind the condition. Charming."
Dr Greensmith of ME Free for All has left an excellent comment:
"I can find something better for Gabriel Fleming to do with his time than, first, draw attention to the poll in the Daily Mail, "Do you think ME is a genuine illness?" for those who missed it the first time around, for which they subseqently apologised and removed it and, secondly, have a poll on his page, which is really no better than the one he is condemning.
It is to publish the reason why there is no question at all that M.E. (I specifically mean Myalgic Encephalomyelitis and not the catch-all Chronic Fatigue Syndrome, with which M.E. has become associated) is a genuine illness and then promote promising, approriately funded, biomedical research, for greater understanding of this seriously disabling illness, in the hope of finding effective treatment and possibly a cure. There is incontrovertible postmortem evidence of inflammation in the spinal cord, in a substantial number of people, from around the world, who have died after having M.E. It is not a question of whether but how many and about the onset and common variables they share.
That should keep you busy Gabriel and if you need some help, I know lots of people who would be delighted to hear from you and I'll be happy to put you in touch."
Interesting to see the article at it's source with the screen shot of the original Daily mail poll at the top. Hopefully Gabriel Fleming will take on board some of the comments left in response to his article and write something that is actually useful as John Greensmith suggests.
Is there really such evidence?? Anyone seen this before, anywhere?
I have heard of a couple cases but not many. But then, how many people do you hear dying of ME anyway?
While I don't like the name "CFS" one bit, I don't care for ME either. It implies imflamation of the spinal cord, something that has not been proven to be in all ME/CFS patients. And even if it were, we don't really know how important that may or may not be... so why name the disease after it?
When thinking about PWC with inflammation of the spinal cord Sophia Mirza comes to mind.
I've read elsewhere that HHV-6 was found throughout Sophia's basal ganglia.
At least Wikipedia does us right by posting Sophia's story. May Sophia rest in peace.
The problem is that not very many autopsies have been performed on PWC. This goes along with the dearth of biological studies looking into ME/CFS.
Ah, here's our good friend Dr. Kerr:
Thanks Teejkay - Amazing - I knew some about her but had never read any details. It boggles my mind how they can ever actually put CFS as the cause of death on a death certificate when they don't know what really CFS is. From what I'm reading here the cause of death was acute renal failure due to dehydration and the rest is just findings and speculation. People don't necessarily die due to inflammation of the spinal cord - the abnormalities of the dorsal root ganglia can't even really be causally linked to CFS when no one knows what CFS really is. Fascinating, though.
Well, I hate the poll was taken down. CAA a similar poll of doctors in U.S. I found that poll of the doctors very informative. It showed about 50% of doctors don't believe CFS is a real entity. I am glad to know that. I mean, CDC in 2007 made the announcement that CFS is a "real illness." Although I had one doctor say he didn't think it was organic, but a "different kind of depression." I never imagined they thought it wasn't a real illness, a different entity. I mean, I had heard of CFS for years. How could anyone say it didn't exist?
I now know I need to have a frank discussion with any doctor and ask them point blank what they think of CFS before I hire them. This poll helped me to see that many doctors may be patronizing me if I bring up CFS but secretly thinking it doesn't exist.
This poll helped me. I also found it interesting that the doctors who believe in CFS are more likely to have a relative or friend with it. And that the poll showed no specialty is more likely to believe or disbelieve than another was helpful also.
I would be curious to see what the public at large thinks now. (although this poll was highly unscientific, I would like to see a scientific poll asking the question.
But I am glad that the magazine now knows that there is no question, from the WHO standpoint. But that doesn't necessarily mean that there isn't any disbelief. And I would like to know how much disbelief is out there.
Oh, and by the way. It is also nice to know that were are becoming a force that can affect change.
POWER TO THE PWC.
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