OverTheHills
Senior Member
- Messages
- 465
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- New Zealand
Excuse me for being very thick here but can I just clarify by talking about my own case. For me beta- blockers and naltrexone are good symptomatic treatments, each controls one of my ME symptoms (POTS and sleep respectively) quite well.
So using this composite measure in a trial of naltrexone as an overall ME treatment I would (1) rate my overall improvement as say 10% because it acheives good control of one of my top five symptoms (2) my TTT shows no change (3) an my actometer data shows I'm a little bit more active because I am less groggy in the mornings but still have to pace carefully to avoid PEM
SO Naltrexone comes out as an ineffective treatment for my ME although it is good for a single symptom control. Which would be a true reflection in my case.
But if you tested beta blockers as an ME treatment I would (1) rate my improvement as 20-50% because controlling OI allows me to be much more active, up to my PEM limit (2) my TTT would be normalish (3) my actometer would confirm (1)
So beta blockers are a moderately effective treatment for my ME which is also true. So for the subgroup that has OI this test would be good.
Hypothetically a really good treatment (like rituximab) affects a number of my symptoms, including PEM,OI, sleep which would lead to a higher overall improvement rating still supported by 2 TTT & 3 actometer
Is that what we are saying? Sorry again to be so thick
So using this composite measure in a trial of naltrexone as an overall ME treatment I would (1) rate my overall improvement as say 10% because it acheives good control of one of my top five symptoms (2) my TTT shows no change (3) an my actometer data shows I'm a little bit more active because I am less groggy in the mornings but still have to pace carefully to avoid PEM
SO Naltrexone comes out as an ineffective treatment for my ME although it is good for a single symptom control. Which would be a true reflection in my case.
But if you tested beta blockers as an ME treatment I would (1) rate my improvement as 20-50% because controlling OI allows me to be much more active, up to my PEM limit (2) my TTT would be normalish (3) my actometer would confirm (1)
So beta blockers are a moderately effective treatment for my ME which is also true. So for the subgroup that has OI this test would be good.
Hypothetically a really good treatment (like rituximab) affects a number of my symptoms, including PEM,OI, sleep which would lead to a higher overall improvement rating still supported by 2 TTT & 3 actometer
Is that what we are saying? Sorry again to be so thick
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