Hi
@NL93
when someone decides to get a particular treatment that has very little information in terms of benefits and risk for our disease population, then one decides on whether the risks are acceptable for them.
1) What are the acceptable risks, one wonders. What would happen to you if you had a horrible relapse, or if you were even sicker than what you are now? Would you get support from your family and friends? Would you be able to access food and care for yourself? Are you ready to accept these risks? Do you have a knowledgeable physician willing to support you regardless?
2) are you ready to accept unforeseen complications that could occur?
What is important when making the decision is to listen to what YOU think is right and whether the risks are acceptable for you. It is also important to be well educated about the medication and whether your current drug regimen increases your risk of complication (for instance, taking corticosteroids increases your risks of a deadly brain virus).
3) financial issue, who pays -sometimes it matters in making a decision.
In the end, no one can make this decision but you. If you are not 100%sure, feel free to defer the decision by a few months to think about it further. Consider that in a couple of months time there will be a new Invest in ME conference, where further info may be provided and there is also the incoming IACFSME conference in the fall where further info may be provided. Waiting few months further leads us in 2017 and with luck we may have new publications.
Best of luck.