Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!
- Thread starter Ben H
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They are at lunch
I can see all of your slides just fine. Thanks so much for posting them.
Desperate folks will try many things, of course.
But Dr Wahls is no longer in bed. But then she was dealing with MS. And she used more help than just diet changes.
I'm not suggesting diet will cure CFS. But so far no one is coming up with any symptom relief. Take for example the flu feeling that CFS folks endure. Or how to get inflammation down.
This is a serious challenge for the severely ill.
But Dr Wahls is no longer in bed. But then she was dealing with MS. And she used more help than just diet changes.
I'm not suggesting diet will cure CFS. But so far no one is coming up with any symptom relief. Take for example the flu feeling that CFS folks endure. Or how to get inflammation down.
This is a serious challenge for the severely ill.
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@Ben Howell Will any of the scientists be talking about autoantibodies, Rituximab or this general topic?
Desperation is an excuse for accepting ludicrous ideas?
Many things are worth trying and something unlikely can turn out to make a difference especially when we don't have a disease mechanism, but justifying nonsense is still not indicated.
And if someone thinks they have discovered something then testing it scientifically is a good idea, legitimate science filters lies from facts. If someone wants to market but avoid testing their "confirmed" treatments then its likely they are selling snake oil and its up to them to prove otherwise.
Many things are worth trying and something unlikely can turn out to make a difference especially when we don't have a disease mechanism, but justifying nonsense is still not indicated.
And if someone thinks they have discovered something then testing it scientifically is a good idea, legitimate science filters lies from facts. If someone wants to market but avoid testing their "confirmed" treatments then its likely they are selling snake oil and its up to them to prove otherwise.
I'm not sure @Gingergrrl
However Mark Davis (of immunology fame) is speaking so i wouldn't count some of that out. Autoantibodies were mentioned earlier.
B
However Mark Davis (of immunology fame) is speaking so i wouldn't count some of that out. Autoantibodies were mentioned earlier.
B
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Thanks, Ben, and I have one more question! Do you get the sense that the majority of researchers feel that they are dealing with one disease with different subgroups vs. several different but similar diseases?
I think this bears repeating. The purpose of this symposium is to share research insights with the greater ME/CFS community. The fact they are even engaging the public with this research is amazing, IMO. The message to take away from this is that research is happening, the physiology of the disease is extremely complex, and we have some amazing minds trying to help us with this disease.
No one can really say anything definitive at this point as far as treatments or cures. The best we can do is work with our doctors, continue spreading awareness about ME/CFS, and donate to places like OMF, SMCI, and the #timeforunrest Kickstarter.
I feel the same way but unfortunately I don't think lack of data is the problem -- it's having the time and resources to analyze it. This is why donating to organizations that support ME/CFS research and advocacy are so important.
No one can really say anything definitive at this point as far as treatments or cures. The best we can do is work with our doctors, continue spreading awareness about ME/CFS, and donate to places like OMF, SMCI, and the #timeforunrest Kickstarter.
I feel the same way but unfortunately I don't think lack of data is the problem -- it's having the time and resources to analyze it. This is why donating to organizations that support ME/CFS research and advocacy are so important.
The word of caution the panel gave is v relevant. If someone thinks they are recovered they need to know they have the same susceptibilities to go down again . I've seen this with friends. Relapse is common . I'm glad I'm not the only one seeing this .
It's because no one knows. Symptom management for our disease means addressing the whole thing and as you know there are no drugs officially approved for our disease. However there has been progress made with POTS that can help patients get back to vertical.
This of course is not a clinical conference but a scientific conference to address cause and pathophysiology.
So much work needs to be done!
This of course is not a clinical conference but a scientific conference to address cause and pathophysiology.
So much work needs to be done!
Hi @Gingergrrl
I am not sure enough to give an answer really, but at a push I'm inclined to say the former, for properly dx patients. That 'feeling' is not necessarily from this Symposium though.
Naviaux's talk addressed this well.
B
I am not sure enough to give an answer really, but at a push I'm inclined to say the former, for properly dx patients. That 'feeling' is not necessarily from this Symposium though.
Naviaux's talk addressed this well.
B