I refer to the Fair Name Campaign Update - Exciting New Direction, written by Rich Carson. http://www.immunesupport.com/library/showarticle.cfm/ID/8864

I would like to pass a couple of short comments. 

When this Fair name campaign first raised its head, the manner in which it did so, left me thinking, "They're trying to tell grandma how to suck eggs!"

Here were a bunch of strangers telling people who have endured ME for years - even decades - what to do and how to do it. Today, 21 May 2008,  they are still pushing that same barrow   -   a very similar barrow to the one that Wessely and others (in the UK) have been pushing since the 1980s. We know the moves; we  know the tactics. We could give Rich lessons if he wants....

After thinking for awhile, I managed to get off my bed and onto the motorized wheelchair without which, I go nowhere - even in the house - and I headed for my computer. 

This update, reminded me of James Jones (if I remember the name correctly) who is a colleague of Rich and Cort. Readers might recall that Jones entertained us with his version of the definitions of sickness, illness and disease. He maintained that people can be sick and ill at the same time, but not diseased. On the other hand, they can be diseased and ill, but not sick! Yet again they can...

Mr. Jones was clearly excited about this topic and went on at considerable length with many convoluted explanations. The feeling I got was that he desperately WANTED to say something, but really he had nothing relevant to say! What a shame! How very sad! If he had just given it some thought, he would have realized that there are none so diseased as those who suffer a terminal illness; a point I raised at the time.

It was clear to me these people had an agenda which has nothing to do with fairness for the sufferers. In fact if they ARE speaking about an actual disease, that disease is not ME. What  makes me so sure of that, is something Rich said. Quote:

"First, and most importantly, the patient community has jumped on board. Your feedback has been positive and encouraging."

Say honey chil'! Haven't yo' been readin' letters on the internet lately? Seems to me no one was jumpin' about anywhere! There sure as heck weren't no GET goin' on in ma neck of the woods. Even ma wheelchair won't do no wheelies no mo'.

Seriously, folks, I am sure Rich et al. don't really think we are a bunch of numbskulls to be manipulated and treated with contempt. I feel sure their hearts are in the right places and probably have some disorder or other in mind. But it is NOT  ME and before they go any further, they really need to get the basics right; sort out their illnesses, sicknesses and diseases and then start afresh towards wherever they thought they were heading in the first place. Who knows....Alice might give them a guided tour of the rabbit hole!

Some time ago, erikmoldwarrior posted a quotation which I think is relevant at this time. I have copied it out below and thank Erik for drawing it to our attention:

"A nation can survive its fools, and even the ambitious. But it cannot survive treason from within.

An enemy at the gate is less formidable, for he is known and he carries his banner openly. 

But the traitor moves among those within the gate freely, his sly whispers rustling through all the alleys, heard in the very halls of government itself. 

For the traitor appears [as] not [a] traitor - he speaks in the accents familiar to his victims; and he wears their face and their garments, and he appeals to the baseness that lies deep in the hears of all men.

He rots the soul of a nation - he works secretly and unknown in the night to undermine the pillars of a city - he infects the body politic so that it can no longer resist. A murderer is less to be feared. "

Cicero, Roman philosopher and statesman, 42 BC 

To put it another way: With friends like these, who needs enemies? (Author unknown.)

Gurli Bagnall

21 May, 2008

The Deified Doctor Syndrome (DDS) By Gurli Bagnall

"My whole thrust is to tell people about inappropriate prescribing. And to get people to stand up for their rights as patients."
 
South Africans especially, she says, suffer from DDS, that's Deified Doctor Syndrome.
 
(Felicity Bielovich, author of  "The Judas Window")
http://www.benzo.org.uk/felicity.htm
 
 

It was indeed kind of Dr. Manu to take the trouble to favour us with a copy of his C.V. Having looked through this extensive list, I was left wondering why I did not feel impressed.

Perhaps it is because many who have high IQs in certain areas, barely rank as idiots in others. Perhaps it is simply that, according to hospital records, the medical profession is the third biggest killer and cause of disease after cancer and cardiac conditions. Or going a step further, maybe it is because some researchers take into account the whole of society rather than just hospitals records, and lean towards the view that preventable medical error outranks ALL other causes of death and disease.

Dr. Manu's note that preceded his CV and explained his views on ME, left me wondering what qualified him to pass an opinion at all. Not that he actually referred to ME. He prefers the title, chronic fatigue syndrome ( CFS) - a condition, concocted by self-serving members of his profession and a condition which bears no resemblance to Myalgic Encephalomyelitis (ME).

His attempt to persuade his readers of his neutrality, had the exact opposite effect. Ill informed comments such as: "..there is no proof that CFS, as currently defined, is a physical or psychiatric disease" must have raised many hackles. This issue is not about a concocted disorder, the definition of which is determined by conflicts of interest and nothing else. It is about a scientifically proven, and a WHO accepted physical disease that is both life-destroying and life-taking. Dr. Manu's statement is blatantly untrue and he can hardly be surprised at being criticized for it.

"...In general, I try to avoid misinterpretations of my position by reminding patients and their families that there is a lot of suffering in this world, but not all suffering is due to a physical or mental disease... A good example is grieving after the loss of a loved one." I doubt if any of his "reminded" patients felt better after THAT little lecture. It was both patronizing and offensive.

The suffering associated with a normal human emotion such as grief, is a far cry from the suffering associated with serious physical illness such as ME. Too many of us have experienced both and we know the difference.

Dr. Manu's credentials might be impressive, but in my book, his credibility isn't.

Regards to all

Gurli Bagnall 2007

Reference: *Reply -Question to Dr. Peter Manu* -
Help ME Circle, 13 March 2007 - see Co-Cure:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0703b&L=co-cure&T=0&P=6499

Dear Professor White

Re: Your response to: "Whiter than White" by Margaret Williams.

For accurate information on ME, logical analysis, referenced statements and integrity, I have never hesitated to recommend researcher and author, Margaret Williams. It was therefore with interest that I read your response to her recent comments regarding the radio interview in which you participated. I must say that your reaction was entirely predictable and having read it, I then listened to the interview in question.

You included your email address in your response, and I took that as an invitation to your readers to express their opinions.

In matters of public interest, satire and cartoons have the power to diffuse anger and violence and from that point of view, certain members of your profession have cause to be grateful to the authors and artists who have made good use of the rich material arising out of one medical scandal after another. This relates in particular to the psychiatric field.

While satirists and cartoonists do not have the power to deliver justice, they do take away dignity from those who deserve, in some instances, no less than criminal prosecution.

Here we are in the year 2007 with promises of patient/doctor partnerships and the assurance that ME is recognized as a neurological disease; fine words, but the arrogance and abuse of power continue. We still hear jokes such as: "The difference between God and a surgeon is that God KNOWS he is not a surgeon." And as relevant today as it was ten years ago is the quote: "Doctors will get off their pedestals when we get off our knees".

It is clear to those who follow developments that the dangers of iatrogenic disease, disability and death have reached the point where medical treatment is now the leading cause of suffering due to health issues. Many books have been written on the subject and patient concerns are constantly ridiculed by the medical profession and those influenced by it, as we see in ME. Time and again, history shows that decades after various concerns were first aired by the lay community, the medical profession issues a statement: "It has been discovered that.."

The advice we have been given and the pills we have swallowed, have resulted in epidemics in obesity, diabetes, cardiac disease, eating disorders and psychiatric conditions to name but a few. If you become an in-patient in hospital, the chances are that you will take an unwelcome guest home with you - an untreatable super bug.

In short, the medical profession and psychiatry in particular, are manufacturing their own business to the financial advantage of themselves, the pharmaceutical industry and hangers on. The disadvantaged are the sick, the dying and their families.

A Google search on psychiatric abuse reveals horrors that have no place in a civilized society. There one sees conflicts of interest, physical and mental abuse, negligence, torture, malpractice, fraud and more.

You may attempt to dismiss the entries as nonsense and the work of a few cranks; you may say that only those easily swayed (such as ME patients) believe them, but think again. It is those who have never experienced anything described therein who are naïve and who could blame them for not wanting to believe that such obscenities occur? On the other hand, those who HAVE experienced "preventable medical error" or seen it happen to family members and/or friends, know the truth of it. Their numbers are growing and they are becoming increasingly angry at the knowledge that this situation has been allowed to grow out of control. They gave the loyalty demanded of them to a profession that has betrayed them.

When you speak of the research needed into ME, they think of the valid research results you have dismissed or ignored. When they ask for treatment to relieve their pain and other physical symptoms, you offer CBT, GET and psychotropic drugs. When you protest that you DO believe ME is physical, you add "As well as psychological" in the same breath. When they ask for the tests that have already picked up anomalies in others, you dismiss those tests as irrelevant.

Your comment during the interview that you believed some tests were too hard on the patient was not convincing. When it comes to ME, few doctors give a hoot about how hard anything is for the patient. The truth of the matter is, that patients want the tests and almost without exception, your profession refuses to make the referrals.

I quote from your response: "Being a psychiatrist in the field of CFS/ME, I am used to being misquoted, misunderstood, or quoted out of context." Others faced with a similar situation might wonder why the controversy revolves around ME and little else. They might ask of themselves, "Could it be that I am wrong?"

If Joe Doe says that black is white, he is ridiculed. If Psychiatrist X says the same, his colleagues stand on their heads and whistle through their toenails in their determination to convince all that it is true. One of their number can simply not be seen to be wrong! How dare anyone suggest that it could be so!

Sadly, Professor White, medical history is full of examples of medical beliefs that defy common sense. And it is full of examples of the same mistakes being made over and over again.

If you truly believe ME is a physical disease as you did (sort of) say, why are you meddling in something that does not concern you? Do you meddle in oncology? Dermatology? Cardiology? I suspect that would frowned upon, so why meddle in neurology?

Members of the medical profession are supposed to belong to society's intellectual elite. Their general behaviour belies that supposition. In fact, given their resistance to learn from their mistakes, doctors must surely be amongst the slowest learners in society.

A few years ago, your colleague, Michael Sharpe, came up with a novel way of using patient anger to his advantage. He stated that it had been accepted as one of the diagnosing symptoms of ME. That was certainly news to me and I wondered, accepted by whom? The WHO? Those engaged in legitimate research and/or patient care? Of course not!

That comment had the potential for causing more harm than had already been done and was a sure way to crank up the anger a notch or two! Perhaps that was the intention?

That the strategy was self-serving cannot be denied. It also highlighted the facts that (1) there is no relationship whatsoever between genuine science and psychiatry, and (2) those who espouse psychiatric opinion are not necessarily smart.

Regrettably stupid, too, are those who forget the lie they told yesterday (e.g. "Those most prone to ME are high-flying, educated, white women in managerial positions") and tell a new and contradictory one today (e.g. "Those most prone to ME are the poorly educated in the lower socio-economic bracket".)

And here's the irony. It is people of this ilk who believe respect is theirs as of right. It is also people of this ilk who have the gall to attack the integrity and intelligence of the sick and vulnerable. You have already discovered for yourself that ME sufferers no longer feel inclined to doff their caps and genuflect at the sight of an approaching stethoscope.

Psychiatric therapists administer CBT - they tell people how to think and behave - yet the number of suicides, marriage break-ups, and criminal charges (mainly for sexual abuse and fraud) are higher in psychiatry than in other branches of medicine.
It hardly seems a safe place from which to draw a role model.

I cannot think of one good reason why an ME sufferer should take advice from average run-of-the-mill psychiatrists or accept anything they say as the truth. In general, the short-comings lie, not with the patients as they would have us believe, but with the same self professed "experts".

Gurli Bagnall
URSULA@xtra.co.nz
New Zealand

19 November, 2007