- Messages
- 1
- Location
- Galle, Sri Lanka
I would absolutely do the two-day CPET test. Even knowing that there would be severe payback or relapse. I already can't support myself financially and have to live with my parents. I'm 38 years old and have been sick (primarily housebound) for the last 8 years and I know we really do need some game-changing results to move research along at this stage.
I think it's appalling that they're not doing the 2-day CPET test as part of this research and the reply and excuses given by Dr Unger are just not credible. Why can't they make the 2-day CPET test an optional extra? At least that way any patients who are enrolled and actually do want to do it can and this research opportunity can be maximised. Patients are already giving so much to be involved and not doing the 2-day CPET test is not just a wasted opportunity but might actually make much of this research useless or even harmful to the CFS/ME patient community at large. Unfortunately the CDC is starting to look like they're giving us patients the run-around again. Not happy about this at all.
I think it's appalling that they're not doing the 2-day CPET test as part of this research and the reply and excuses given by Dr Unger are just not credible. Why can't they make the 2-day CPET test an optional extra? At least that way any patients who are enrolled and actually do want to do it can and this research opportunity can be maximised. Patients are already giving so much to be involved and not doing the 2-day CPET test is not just a wasted opportunity but might actually make much of this research useless or even harmful to the CFS/ME patient community at large. Unfortunately the CDC is starting to look like they're giving us patients the run-around again. Not happy about this at all.