Dr Mady Hornig's Presentation at the P2P. Transcript from the video.

[snowathlete]

To me, Mady Hornig's use of the term neuropsychiatric is fine. I get what she is saying. She is not saying the disease is psychological. What she is actually getting at is that a bunch of other diseases long associated with traditional psychiatry, aren't necesarily psychological either. I suspect that most people get what she is saying, and you would hope the panel, with their background in medicine, get it too.

Having said that, given the loaded history of the disease and given the very real fact that some people still try to paint the disease as psychological, I'd much prefer if people avoided terms like this which could be misunderstood by some, or twisted to mean something else by others.

Also, for the same reasons, I think from ME/CFS's point of view, it is preferable to make comparisions with diseases like Parkinsons and MS, rather than schizophrenia and depression, which people still maintain old views about.

I remain impressed with the broad and detailed work being done by Mady Hornig and those she is working with.

 

[*GG*]

'Neuropsychiatric' is a broad brush terminology that covers many illnesses in the field of brain pathophysiology. I would rather these researchers be working on our case than be splitting hairs over this terminology even if it is unfortunate archaic medical terminology.

They are doing great scientific work on our illness which they believe is Neuroimmune and biomedical. Show some respect to people with Schizophrenia and Depression and illnesses like PANDAS, Autism, MS, Brain Injury - acquired and traumatic, Alzheimer's and Dementia etc who all get lumped under the Neuropsychiatric umbrella.

Is it really archaic or more new age?

GG

 

[duncan]

snowathlete, why in the world would you think the panel will get it? Researchers and clinicians have been all too eager to embrace the psychiatric explanation for the last 40 years, usually at our expense, usually because that perspective offered the least friction. Why should they change now? Imo, the statement easily lends itself to misinterpretation, especially in light of the context in which neuropyschiatric was used, i.e., along side of two widely believed psychiatric conditions.

If Mady Hornig was trying to make a point that each of the disorders she mentioned had biological underpinnings, that particular gathering, with so much hanging in the balance, may not have been the best opportunity to do it. But if she were resolved to do so, personally I wished she had made it crystal clear, with absolutely no room for ambiguity or misinterpretation.

 

[snowathlete]

snowathlete, why in the world would you think the panel will get it? Researchers and clinicians have been all too eager to embrace the psychiatric explanation for the last 40 years, usually at our expense, usually because that perspective offered the least friction. Why should they change now? Imo, the statement easily lends itself to misinterpretation, especially in light of the context in which neuropyschiatric was used, i.e., along side of two widely believed psychiatric conditions.

If Mady Hornig was trying to make a point that each of the disorders she mentioned had biological underpinnings, that particular gathering, with so much hanging in the balance, may not have been the best opportunity to do it. But if she were resolved to do so, personally I wished she had made it crystal clear, with absolutely no room for ambiguity or misinterpretation.

I said "you would hope".

I said that because I hope they get it. They may do. They may not. As I understand it these people have no known history with the disease. That does not mean that they don't have preconceived ideas about it, but then it doesn't mean that they do either. We don't know. Given its medical use and their background, they should. Though that is no guarentee that they will.

Irrespective of whether they understand the term correctly, I hope they also realise that the disease is not psychiatric (these two things don't necesarily go hand in hand). Given that they state in the draft:

"...ME/CFS is not a psychiatric disease..."

We have some reason to believe they don't think it is a psychiatric disease. Whatever comes of this report - perhaps nothing - that seems good to me.

 

[wastwater]

Bump for th17