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Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

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Alvin2

The good news is patients don't die the bad news..
Messages
3,036
Questions are shut down right now, i tried submitting one but got the message saying they will be taken after lunch. I assume that means it did not go through, hope i don't end up double posting.
 
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perrier

Senior Member
Messages
1,254
Alvin2 said:
Then i suggest a clinical trial with dozens or hundreds of ME/CFS patients to show this is a game changing treatment.
You will forgive my skepticism but saying this will work for others based on a sample size of one with no placebo control is not convincing
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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.
 
A

Alvin2

The good news is patients don't die the bad news..
Messages
3,036
perrier said:
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.
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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.
 
bspg

bspg

Plant Queen
Messages
547
Location
USA
Ben Howell said:
I'm as utterly impatient as everyone else, but we are not going to be getting clinical recommendations from this Symposium.
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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.

leela said:
I feel like donating my living corpse to these people. They could just take samples all day for all I care, what else of value am I doing over here?
I wish we could just park ourselves in a comfy chaise in a nice quiet country house and have these people use us for science!
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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.
 
Kati

Kati

Patient in training
Messages
5,497
perrier said:
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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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!
 
Ben H

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Gingergrrl said:
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?
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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.


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Ben H

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Valentijn said:
Worked fine for me, long before I got sick. Now a ketogenic diet makes me sicker and weaker. If metabolic pathways are already impaired, it doesn't make sense to cut off the major one.
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Same here. Was a staple in my bodybuilding days! *misty eyes*


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