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These instructions are adapted from the main study site and are optional for those who would like to provide information that would be beneficial for researchers evaluating data for study purposes.
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When to post
To maximize safety, protocol efficacy and chance of success, we prefer that all new members (even those who think they are doing well independently) to post a brief progress report every 7-10 days (more often only if not doing well).
The purpose for regular posting is so any problems can hopefully be caught early. Also, having details of past progress allows us to be better able to assist you if you need help.
What to post
Please use this simple format each time you post a report.
Briefly list these details:
MP meds:
Include doses & schedules for each,
flag any changes, and please indicate
number of days at current dose/schedule.
Non-MP palliative med use:
Natural light exposure:
Symptoms: (severity on a scale of 1-10)
List each on a single line with severity first, then the symptom description.
List only those that are significant and recent.
Indicate if they are tolerable or intolerable.
Comments:
Questions:
Notes on posting
Important details may get lost when too much information is posted.
Keeping a daily journal is helpful to track immunopathology but we ask that you not post so much that what is important is obscured by too much detail.
List your ongoing non-MP meds in your report each time.
Flag extra palliative non-MP meds you've taken for the week that will give a better picture of current symptom severity. (e.g., "extra dose 5mg valium on 4 Jan for special event").
List measures to prevent sun exposure (NoIRs, covered up, 6% zinc sunscreen) in your natural light exposure entries.
Report sun exposure (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs playing tennis outdoors on Friday) for the week. This provides a clue to the cause of any symptom increase.
Rating symptoms on a scale of 1-10 (1 meaning barely noticeable and 10 meaning 'call 911') is helpful. Rating them at their highest for the week paints a good picture of how you are doing since symptoms should be tolerable at all times.
How to post in your own progress thread
When you want to post a progress report, simply "reply" to your own post. This will keep all of your progress reports in one place so that it is easy to follow your progress over time.
To find your own post each time you log in... go to the green (My Account) button up the top right of each page and the link should be listed in your watched topics display.
When you have completed phase 1 of the protocol, you may continue to post here on the CureMyTh1.org site, or can migrate to the main study site. It is your choice where you post your progress beyond phase 1. In either case, contact Dr. Marshall by PM to gain access to the Phase 2/3 forum so you can read and learn from the past progress of others on the protocol.
