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gilablue66 karma

I recently learned about the struggles Lyme and ME/CFS patients face when seeking treatment in both socialized and privatized medical systems. (You can see a short video about how severe ME/CFS can be here: https://www.omf.ngo/2015/11/11/palo-alto-tv-news-covers-daviss-family-struggle-with-sever-mecfs/) These struggles include dismissal from doctors, disbelief, and prescribing treatments that do not help and sometimes harm. There is a huge need for more research about these diseases, better medical education, and better treatment. How can a non-profit like Patient Revolution help patients like these?

gilablue27 karma

The biggest open secret is that, on PubMed, there are thousands of articles discussing the biological basis for this disease. Unfortunately this isn’t taught in medical schools and doctors don’t have time to read journal articles. A few weeks ago, the Open Medicine Foundation held a conference at Stanford discussing molecular and immune function in ME/CFS patients. If this interests you, you can read the summary or watch the recording here: https://www.omf.ngo/community-symposium/ Psychological causes were not mentioned once.

gilablue12 karma

I agree. Some patients do imagine illnesses, make up illnesses for sympathy, or have psychosomatic symptoms based in trauma. However, just because a doctor can’t see an illness doesn’t mean it isn’t there. They may not be looking in the right places. This is why empathy, and relationship building are essential so that doctors don’t mistake patients who are suffering for patients who are malingering. It sounds like listening to patients is at the core of what this doctor’s non-profit and Patient Revolution are about.

gilablue10 karma

I’m not the person you asked, but some ME patients are improving antivirals, and high-dose B12. David Systrom is an accidental ME hero and has had great success with the drug mestinon, described here: https://www.healthrising.org/blog/2017/08/16/invasive-exercise-tests-chronic-fatigue-fibromyalgia-autoimmunity/

gilablue5 karma

Of course. This is not unique to ME/CFS but we are seeing more and more that most diseases have a physical and a mental component. The part that gets tricky is that symptoms (like fatigue and memory problems) that are common in psychiatric diseases like depression can also be caused by physical problems. This is dangerous for ME patients because some of the treatments are time sensitive. If a patients wastes their first 6-12 months on SSRIs, those treatments done at a later stage will not be effective.