snowathlete
Senior Member
- Messages
- 5,374
- Location
- UK
Hi Hip,
I think what youve done is very good and clear. Perhaps a flowchart isnt necesary?
Personally, I would probably promote round 3 to round 2 position, but thats just my opinion, and others may disagree, which of course is fine. That is probably going to be the difficult bit; working out the best order. Ideally it would be based on hard facts, but those are hard to come by, so maybe some polls or something?
Mind you, whatever the order, I guess its open to people skipping one round in favour of another if they think it is likely to be more applicable to them.
I think the main thing is having the information available and in an easy to follow format like you have already produced.
list of diseases with similar symptoms to CFS.
Regarding this side of things, it might be worth adding some others, which presumably means creating our own list: HIV, Hepatitis, Para Thyroid, Diabetes, Lyme
I wrote out a sort of intro, some of which is similar to yours, but you might want to incorperate some of it on your site if you think some of it is useful:
This roadmap has been created as a collaborative project by members of the PR, to help inform people of the treatments available for ME/CFS and the prior tests that you should take in order to establish if a treatment might be suitable for you, and to exclude other diseases first, that are often easier to treat.
The things higher up on the roadmap are those treatments that have some record of success and that are carried out by respected ME/CFS doctors. They are those treatments that we believe are the most likely to result in you making a positive response. However, this should not be taken as medical advice, and you should make your own decisions on which treatments are best for you. With this in mind, if you feel drawn to a particular treatment on the roadmap then by all means give that area of the roadmap higher priority.
Some tests can provide good information about your condition, but may not have a corresponding treatment, and thefore these tests will appear lower on the roadmap as the primary objective is to work toward treatments that might work.
This roadmap is an ongoing project and aims to be as comprehensive as possible, but it is not an exhaustive chart of treatments, as there are so many different 'treatments' available. This roadmap also does not cover pacing, or resting, which although beneficial as means of managing the illness, are not strictly speaking a treatment.
If however, you think something is missing and should be added to the roadmap then please contact the administrators.
A note about tests.
This roadmap promotes the use of tests before treatments where they exist. However, some tests are known to be unreliable, and will be noted on the roadmap as such. In addition, some tests are expensive, or are not available in all countries, and therefore you may choose to bypass the test and go straight to treatment. This can be a helpful means of empirical testing in itself, as a treatment working may signal you had a problem, even though you did not test for it. Before undertaking any treatment you should first become familiar with any risks of taking that treatment and if unsure, you should run it by a good ME/CFS doctor first.
A final note about testing: We have tried to group tests together that are related, but in order to save money it may be worth testing one at a time if you are concerned about the cost.
I think what youve done is very good and clear. Perhaps a flowchart isnt necesary?
Personally, I would probably promote round 3 to round 2 position, but thats just my opinion, and others may disagree, which of course is fine. That is probably going to be the difficult bit; working out the best order. Ideally it would be based on hard facts, but those are hard to come by, so maybe some polls or something?
Mind you, whatever the order, I guess its open to people skipping one round in favour of another if they think it is likely to be more applicable to them.
I think the main thing is having the information available and in an easy to follow format like you have already produced.
list of diseases with similar symptoms to CFS.
Regarding this side of things, it might be worth adding some others, which presumably means creating our own list: HIV, Hepatitis, Para Thyroid, Diabetes, Lyme
I wrote out a sort of intro, some of which is similar to yours, but you might want to incorperate some of it on your site if you think some of it is useful:
This roadmap has been created as a collaborative project by members of the PR, to help inform people of the treatments available for ME/CFS and the prior tests that you should take in order to establish if a treatment might be suitable for you, and to exclude other diseases first, that are often easier to treat.
The things higher up on the roadmap are those treatments that have some record of success and that are carried out by respected ME/CFS doctors. They are those treatments that we believe are the most likely to result in you making a positive response. However, this should not be taken as medical advice, and you should make your own decisions on which treatments are best for you. With this in mind, if you feel drawn to a particular treatment on the roadmap then by all means give that area of the roadmap higher priority.
Some tests can provide good information about your condition, but may not have a corresponding treatment, and thefore these tests will appear lower on the roadmap as the primary objective is to work toward treatments that might work.
This roadmap is an ongoing project and aims to be as comprehensive as possible, but it is not an exhaustive chart of treatments, as there are so many different 'treatments' available. This roadmap also does not cover pacing, or resting, which although beneficial as means of managing the illness, are not strictly speaking a treatment.
If however, you think something is missing and should be added to the roadmap then please contact the administrators.
A note about tests.
This roadmap promotes the use of tests before treatments where they exist. However, some tests are known to be unreliable, and will be noted on the roadmap as such. In addition, some tests are expensive, or are not available in all countries, and therefore you may choose to bypass the test and go straight to treatment. This can be a helpful means of empirical testing in itself, as a treatment working may signal you had a problem, even though you did not test for it. Before undertaking any treatment you should first become familiar with any risks of taking that treatment and if unsure, you should run it by a good ME/CFS doctor first.
A final note about testing: We have tried to group tests together that are related, but in order to save money it may be worth testing one at a time if you are concerned about the cost.