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Interesting info for those of you who have been diagnosed with ME /CFS on top of MG

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Unread 11-14-2012, 07:26 AM   #1
rach73
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Default Interesting info for those of you who have been diagnosed with ME /CFS on top of MG

Heres a link to the info:


http://www.meactionuk.org.uk/Wessely...ddox_Award.htm


Simon Wessley is a ME "expert" (note the use of speech marks) and this disputes his scientific findings that ME/CFS is a somatiform disorder.

Its very interesting for UK members but also USA members.

I hope you find it interesting

Rach
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Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
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Unread 11-14-2012, 08:32 AM   #2
StephC
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This is way over my head, is this guy saying not legitimate illness but in your head?
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Unread 11-14-2012, 08:42 AM   #3
rach73
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Wessely says it is a somatiform disorder. Prof Hooper is showing the evidence that says it is an organic neurological illness as did the world health authority in 1969.

The problem is wessely is on the boards of some big healthcare isurance companies (USA / Worldwide) and is popular in the UK government. The healthcare companies are denying people payouts because of wesselys "research" and in the UK people are being denied benefits due to him.

His research is fundamentally flawed and ignores all scientific research that shows ME/CFS is not a "functional" illness.

The article is pretty heavy but interesting.

I hope that helps
Rach
__________________
Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
rach73 is offline   Reply With Quote
Unread 11-14-2012, 11:29 AM   #4
alice md
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Simon Wesley was a young and ambitious psychiatrist .

Neurologists referred to him (like they always do) patients in which they could not find a cause for their "unexplained" weakness.
I believe that Wesley truly wanted to help those patients, but also saw this as a great opportunity to make a name for himself, as the one who found the solution for their problem.

His way to solve the problem was to make a questionnaire and give this questionnaire to those patients with "unexplained" disease and patients with known neuromuscular disorders (such as MG). And also to patients with depression.

Among the MG patients were patients with "pure" MG (=those whose all their symptoms could be explained ) and patients with a combination of MG and "unexplained" symptoms.

The questionnaires of the patients with chronic unexplained fatigue were most similar to those of MG patients with depression. (=patients whose some of their symptoms could not be explained by MG, but still had diagnostic tests).

This "landmark" paper was published in the JNNP. (instead of being thrown out by the reviewers). Not only that, it became one of the most cited papers.

http://jnnp.bmj.com/content/83/1/4.full

I came across it trying to understand why neurologists assume that MG symptoms they can't explain are caused by "emotional problems".

It made me think that at least some CFS patients are probably MG patients with normal tests.
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Unread 11-14-2012, 01:28 PM   #5
rach73
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I think a whole medical paper dedicated to "how brilliant am I?" sums up the man completely!

Arrogance doesn't even begin to sum it up.

I would like to suggest he suffers from some sort of narcissistic personality disorder!

But then who would believe me? I am but a mere patient.

Rach
__________________
Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
rach73 is offline   Reply With Quote
Unread 11-16-2012, 02:50 AM   #6
AnnieB3
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Rach, It's nice to see you again.

“Two strong-minded individuals are the first winners of an award for standing up for science…."

That first sentence alone told me all I needed to know. Male doctors are "strong-minded" and then female sick patients must be "weak-minded."

There is so much prejudice - instead of truly scientific thinking - out there in medicine that it makes me nuts.

Did you know that they narrowed down Gulf War Syndrome somewhat? One of the many vaccines that was given to Vets was the Anthrax vaccine. I will bet you a disease that they experimented on our Vets. One of the adjuvant ingredients in the vaccine is Squalene, which can supercharge the immune system. Not so great if you have a family history of that. In this case, however, the Vets got ANTIBODIES to squalene. That's right, Squalene Antibodies. It created a very real neurological condition!

There is too much we don't know about the human body or what can go wrong to be so damn arrogant. Uh-oh, there I go being reactive or overreactive or hysterical or somato-psycho-hypochondriacally-estrogenated again.

If they listened to us "mere patients" more often, they might actually learn something.


Annie
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