follow up poll

[EYAKLLE]

Follow up poll

 

[weyland]

This is a little confusing. In your previous poll you equated CCC and Ramsay's description as "true ME." Here you are differentiating them. Why?

 

[EYAKLLE]

Because one of the forum members intelligently told me it would be useful to make the distinction.

I am suspicious of your instant hit to discredit me with cleverly worded sentences to slowly give a false impression over time of anything I say.

Anyway.....
Who s next to come in n back u up ?! Let me guess !

 

[weyland]

I am suspicious of your instant hit to discredit me with cleverly worded sentences to slowly give a false impression over time of anything I say.

I'm not trying to discredit you I'm trying to understand you.

 

[EYAKLLE]

Look, they diluted the real disease n used every trick in the book.
Some of us , all of us , have a right to the truth

 

[weyland]

Look, they diluted the real disease n used every trick in the book.

Who is "they", the authors of the CCC or?

 

[EYAKLLE]

CCC is not CDC
U know the difference right?
You re the one who wanted an extra category n rightly so

 

[Empty]

Can you state the similarities and differences between Ramsay and ccc?

Also, not to confuse things further but just wondering why the icc wasn't included...

 

[EYAKLLE]

Yeah, we need as many polls as there are different versions of this disease.......!!!!!!
As long as people see true ME as the only ME...all that counts...not those lipkin cytokines that do backflips into grant pots of money !!! He ll just retire. His study ll be taken over, renamed, forgotten. Others ll move onto other research efforts.

 

[Empty]

Very creatively put lol.

I agree with you that a tightly defined group/s are crucial to unravelling this mess. I feel if possible, patients can engage with this process actively regardless of what their Doc has diagnosed them with.

If deciding upon trialling something another patient has said was helpful to them on this forum, its absolutely necessary for me to distinguish what they have been helped with: tiredness or neurological for example, PEM, non-PEM.

 

[San Diego]

If deciding upon trialling something another patient has said was helpful to them on this forum, its absolutely necessary for me to distinguish what they have been helped with: tiredness or neurological for example, PEM, non-PEM.

It took me a long time to learn that! Well said.

 

[Cort]

If someone could show how the symptoms of ME and CCC are different that would be great. I thought they were basically the same!

 

[weyland]

If someone could show how the symptoms of ME and CCC are different that would be great. I thought they were basically the same!

Depends on which ME you're talking about. Unfortunately Ramsay never formulated his description of the disease in criteria or case definition format so it's a bit difficult to accurately compare with the CCC. The only thing he was clear about was that muscle fatigability on exertion was a required symptom. There are various versions of the London ME criteria that attempt to formulate his description in criteria format but I find them to be a bit diluted in each successive version.

The emphasis on fatigue is what I find to be the largest difference between Ramsay ME and CCC 'ME/CFS'. In the CCC, significant, persistent fatigue is the #1 required symptom. Ramsay's description does not include such a requirement.

 

[Cort]

Depends on which ME you're talking about. Unfortunately Ramsay never formulated his description of the disease in criteria or case definition format so it's a bit difficult to accurately compare with the CCC. The only thing he was clear about was that muscle fatigability on exertion was a required symptom. There are various versions of the London ME criteria that attempt to formulate his description in criteria format but I find them to be a bit diluted in each successive version.

The emphasis on fatigue is what I find to be the largest difference between Ramsay ME and CCC 'ME/CFS'. In the CCC, significant, persistent fatigue is the #1 required symptom. Ramsay's description does not include such a requirement.

Thanks - I have some muscle fatigability but not that much; I have more muscle pain upon exercise and fatigue overall. I actually think that it's possible my muscles over time may get stronger - I'm just in some much pain by then and so tired that it's not worth it.

 

[Empty]

Depends on which ME you're talking about. Unfortunately Ramsay never formulated his description of the disease in criteria or case definition format so it's a bit difficult to accurately compare with the CCC. The only thing he was clear about was that muscle fatigability on exertion was a required symptom. There are various versions of the London ME criteria that attempt to formulate his description in criteria format but I find them to be a bit diluted in each successive version.

The emphasis on fatigue is what I find to be the largest difference between Ramsay ME and CCC 'ME/CFS'. In the CCC, significant, persistent fatigue is the #1 required symptom. Ramsay's description does not include such a requirement.

Thanks.

Is it possible to link to the best of Ramsay ME definition and the diluted versions.

Also, what precisely did he mean by muscle fatigability. I am still not 100% on this point...

 

[weyland]

Is it possible to link to the best of Ramsay ME definition and the diluted versions.

http://www.shoutoutaboutme.com/definitions/from-ramsay-to-seid-defining-me-and-cfs/

Also, what precisely did he mean by muscle fatigability. I am still not 100% on this point...

Specifically he seemed to be talking about muscle power. Trivial exertion made the muscle weaken rapidly and it took an inordinate amount of time for the strength to return. There was a study that demonstrated both things quite clearly using an isolated leg exercise, I can't find it right now unfortunately.

 

[Empty]

Thanks @weyland. That is what I was getting at, if it can occur in isolated muscles or if it a widespread relapse.