Parkinsons' Disease, biomarkers, talking points related to ME and psychosomatic diagnoses

Alvin

Alvin

Senior Member (Voting Rights)
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This thread has been split from this thread:
Petition: Per Fink Should Not Spread Lies about ME at Columbia University!

Esther12 said:
Because their claims have been more thoroughly debunked than Fink's.

We're a long way from the point where the consensus on people like Fink is that they're no more respectable than homeopaths. To make progress most effectively we need to recognise where we are at the moment. To me, it seems that there are problems with Fink's work and claims, but we need to go into the details of those problems in order to convince others. I thought it was good to have the petition pointing to Fink citing PACE as evidence supporting his approach (assuming that was right, I never checked the reference) - indicating that he was unable to distinguish between good and bad research, but to be able to argue that he was so untrustworthy and incompetent that he should not be invited to speak needs really overwhelmingly strong arguments.
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We have no biomarker for Parkinsons disease, the is no proven disease mechanism and diagnostic tests are mostly to rule out other diseases. MRIs and spect scans typically cannot show the damage even in severe patients. Yet if anyone where to claim its psychosomatic they would be laughed out of the room.
If we are willing to turn a blind eye to people determined to harm us we will get harmed. All that evil needs to succeed is for good people to do nothing.
 
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Alvin said:
We have no biomarker for Parkinsons disease, the is no proven disease mechanism and diagnostic tests are mostly to rule out other diseases. MRIs and spect scans typically cannot show the damage even in severe patients. Yet if anyone where to claim its psychosomatic they would be laughed out of the room.
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As @Esther12 suggestd, I think this is misleading and probably unhelpful @Alvin because other PWME reading may take is as fact. Parkinson's disease has involuntary physical signs that are so unique and typical that they are one of the first things students get taught to recognise. The cogwheel ratcheting that occurs when flexing and extending the patient's elbow is something all doctors remember first encountering in a clinical tutorial and thinking 'yes, that's easy to recognise, I get that one'. And since the 19th century it has been known that there is specific brain pathology in the substantial nigra. A well trained neurologist can predict with over 90% accuracy the chronic deteriorating course of true Parkinson's disease and discriminate it on the basis of clinical signs from the other Parkinsonian syndromes like vascular Parkinsonism and Pick's disease.

The reality is that there is no analogy with ME where there are no such signs that students can recognise and no post mortem pathology.

Edit: in relation to the suggested abnormalities in the following post - none of these has been reliably established, @Alvin. They just ain't facts.
 
Jonathan Edwards said:
As @Esther12 suggestd, I think this is misleading and probably unhelpful @Alvin because other PWME reading may take is as fact. Parkinson's disease has involuntary physical signs that are so unique and typical that they are one of the first things students get taught to recognise. The cogwheel ratcheting that occurs when flexing and extending the patient's elbow is something all doctors remember first encountering in a clinical tutorial and thinking 'yes, that's easy to recognise, I get that one'. And since the 19th century it has been known that there is specific brain pathology in the substantial nigra. A well trained neurologist can predict with over 90% accuracy the chronic deteriorating course of true Parkinson's disease and discriminate it on the basis of clinical signs from the other Parkinsonian syndromes like vascular Parkinsonism and Pick's disease.

The reality is that there is no analogy with ME where there are no such signs that students can recognise and no post mortem pathology.

Edit: in relation to the suggested abnormalities in the following post - none of these has been reliably established, @Alvin. They just ain't facts.
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I know a great deal about Parkinsons and its universe so while i am not a doctor i can attest to what kind of treatment they receive compared to what we do.

Nobody suggests what they have is psychosomatic and while the alpha synuclein killing brain cells in the substantia nigra is only a theory it is a reasonably solid theory with evidence behind it much like the theory that we have an immune system disorder of some kind. From Parkinson gait to loss of sense of smell to freezing episodes Parkinsons is unique as you say but if the PACErs convinced themselves its psychosomatically induced they would be able to sink their teeth into it easily and build an impressive house of cards. The cause, the disease mechanism or what sustains it is not understood at present and alpha synuclein is found in the bodies and brains of a good percent of the population yet the prevalence is below 5% in patients above 80 years old and closer to 1% in elderly populations under 80 years of age. They can easily claim stress or whatever psychosomatic bullshit they wish to believe is the precipitating cause or perpetuating mechanism, interpret evidence and the lack of it to make it plausible and it can't be disproven. But no patient or medical association would stand for it so they would not try but such a house of cards could easily be constructed to patient's detriment like it is for us.

Hence I think its a great analogy, we also have a unique pathophysiology if you know to look for it, From patterns in cognitive dysfunction to PEM (which is quite unique to ME) to energy envelopes, thresholds and so forth. And we have the Canadian and International Consensus criteria, not 100% accurate but very good. In fact Dr Leonard Jason claims he has developed a diagnostic questionnaire that can diagnose ME in patients ranging from mild to severe with extremely high reproducible accuracy in all tested cases. Assuming this is verified then this can be taught in medical school to all physicians and put into use like the Parkinsons tests are today.

And you mention its been known since the 19th century, a hundred years from now doctors could be saying ME can be recognized by a careful checklist done on patients (and hopefully treated with the correct drug). By then hopefully even Parkinsons will have a diagnostic test and even a cure. Maybe this checklist only needs to take a few years if the Dr Leonard method is verified

And lets not forget Narcolepsy was considered psychosomatic despite the fact treatments for many of symptoms were already in use, none of them perfect but stimulants, sleeping pills and anti depressants work for it. Cataplexy is a virtually unique symptom of narcolepsy which still didn't stop it being called psychosomatic. The worst part is that patients smash into REM sleep so that was a gold mine for justification that it was psychosomatic. It took the discovery of a new neurochemical to finally disprove the psychosomatic theory and the discovery that Orexin is part of the REM on/off switch which is the reason patients experience REM episodes not because of psychological trauma.

So basically three diseases all with unique symptoms that can be reliably diagnosed without imaging or blood tests or MRI/CT, two that are unlucky to have psychiatry sinking its teeth into them
 
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alex3619 said:
That is the history of psychogenic medicine right there. Its psychogenic until a new discovery forces a total rethink, and this usually happens after a new technology is available.
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Indeed. But we do have measurable abnormalities as well (while we are alive which is even better, though a small percentage of Parkinsons patients can have measurable abnormalities also while alive) but the PACErs are not ready to give up their lies so we are going to need a disease mechanism to do it. In narcolepsy dream analysis was a common treatment that has no success despite Dexedrine and later Modafinil in common use.
This is an opinion but Parkinsons got lucky that it was discovered before Freud and they never went after it post Freud.
 
Alvin said:
And we have the Canadian and International Consensus criteria, not 100% accurate but very good. In fact Dr Leonard Jason claims he has developed a diagnostic questionnaire that can diagnose ME in patients ranging from mild to severe with extremely high reproducible accuracy in all tested cases. Assuming this is verified then this can be taught in medical school to all physicians and put into use like the Parkinsons tests are today.
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I think the difference between a questionnaire based diagnosis for ME as you describe and the Parkinsons' Disease signs @Jonathan Edwards describes is that the first is patient reported symptoms, and the second is doctor observed signs - ie something the doctor can see.

It's a bit like the difference in the seriousness with which a GP investigated me when I had a rash of no known cause - that was an objective sign the doctor could see, so psychiatry doesn't get a look in. With my ME, all the doctor has is my description of my symptoms, which a doctor can all too easily psychologise.

Symptoms and signs - very different.
 
Trish said:
I think the difference between a questionnaire based diagnosis for ME as you describe and the Parkinsons' Disease signs @Jonathan Edwards describes is that the first is patient reported symptoms, and the second is doctor observed signs - ie something the doctor can see.
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What difference does that make?
When checking for Parkinsons doctors do everything from physical tests in their office to questionnaires to asking spouses about behaviour from REM behaviour disorder (acting out dreams, very common in Parkinsons, often a precursor for future Parkinsons if the patient doesn't already have it) and so on in their office. RBD does not happen in doctors office because it typically occurs during REM sleep which would mean patients are not awake or talking to the doctor during their appointment. An overnight sleep study is a diagnostic test that can detect it though.
Its not like in early Parkinsons everyone has the shakes or freezing episodes, Parkinsons fluctuates a great deal from day to day an even hour to hour in many patients. In a doctors office in early stages patients can often appear normal before they are even put on Levodopa. Though often enough patients wait till they are severe before getting to the doctor which would often be more apparent. Parkinsons related Dementia is yet anther topic i could spend a lot of time talking about but it is not always apparent in a doctor's office and can often require spouses and family to explain to the doctor because the patient on the surface in an appointment presents reasonably normal. The hallucinations and memory episodes often don't happen on a doctor's schedule yet they have to prescribe medication to deal with them based on what they are being told but not seeing first hand.

So if we are going to lie that we have ME symptoms then Parkinson's patients are going to lie about not being able to smell things, to freezing episodes to cognitive issues to lack of facial expressions to seeing and hearing things.

I have personally gone through the extensive Parkinson/Dementia testing package, i don't have either but i was tested for them very thoroughly and they range from questionnaires to reflexes to strength testing.

It's a bit like the difference in the seriousness with which a GP investigated me when I had a rash of no known cause - that was an objective sign the doctor could see, so psychiatry doesn't get a look in. With my ME, all the doctor has is my description of my symptoms, which a doctor can all too easily psychologise.

Symptoms and signs - very different.
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We have lots of symptoms, some can even be reproduced in a doctor's office from PEM to cognitive issues and they could even do things like tilt table tests, tests for POTS and so on. And again they can go through diagnostic criteria right in their office like they do for Parkinsons.
When i go to the doctors office its very apparent that i am quite week and confused on bad days. My gait resembles Parkinsons patients on occasion. Very observable.
 
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Alvin said:
Thats my thread, i have not collated them yet (if i ever get to it, not sure if its already in there or not)
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Alvin, did you see the link I posted above? I think because I edited it and reposted it may have gotten lost in the shuffle.
 
@Alvin, I see, ok. I didn't put it together that you were specifically looking for Parkinson's in this case.

I've also struggled to find this for Parkinson's. The most I could ever find was that there were psychological issues associated with dopamine flow around medications, which is sensible.
 
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