A CFS/ME livestream

A livestream about Chronic Fatigue Syndrome (CFS/ME) from the husband, friends, and doctors of Dianna Cowan (Physics Girl).

CFS is a seriously under-researched illness. Maybe because it’s difficult to know where to start. The majority of people with CFS are women. And the ones who get it are often so sick that they (we) don’t have the energy to become activists.

The recent pandemic, and the subsequent and predicted pandemic of people with long-Covid, will hopefully bring more attention to CFS and fuel more research.

What are the symptoms of CFS? Common symptoms include persistent and unexplained fatigue that doesn’t improve with rest, post-exertional malaise (PEM), heightened sensitivity to chemicals, light, and sounds, difficulties with memory and concentration, sleep disturbances, muscle and joint pain, headaches, sore throat or tender lymph nodes, dizziness, unrefreshing sleep, flu-like symptoms, digestive issues, heart palpitations, and swollen lymph nodes.

How does it feel to have CFS? For me, it feels like having severe influenza without a runny nose, coughing, and so on. The brain fog takes the form of a combination of a feeling of “cotton in the head” and reduced executive cognitive functions such as the ability to focus, take in information, remember, talk coherently, write longish texts, and so on. It’s very difficult to process information. If I want to watch a movie, it typically has to be easily digestible and in short portions. My sleep has been severely impacted in periods, although it’s better now after my condition became more stable. My system has trouble regulating itself, including heat and cold. I have digestion problems and need to avoid many different types of foods. I have chemical sensitivities. I have strong sound sensitivity and get exhausted in a noisy environment. It’s very difficult to impossible to schedule anything in advance since I don’t know how my condition will be on any one day or time of that day. (Although a lot of rest for several days, if not weeks, in advance, makes it more lightly I’ll be able to do a little.)

It has nothing to do with depression, although I have had sadness, grief, despair, and anger come up because of all the limitations of CFS. It can also be profoundly scary, especially in bad periods. For me, it brings up survival fear since I don’t know if I’ll be able to take care of myself or have someone take care of me.

It severely limits our life in the world and puts our life in a very different course from how our lives used to be and what we had planned. As I mentioned, grief and fear often come up in response to our new life situation.

Others often do not understand. Friends have taken it personally if I have to say “no” or cancel. I have had several experiences with people refusing to take it seriously (including professors and advisors at the university). My main doctor did not take it seriously for a long time, although that changed when he got a medical student in his office. As recently as last year, I went to a medical specialist in an unrelated field, and he literally rolled his eyes and scoffed when I told him I have CFS.

Living with CFS also makes it very clear that we live in a society designed by and for abled people. For instance, before the pandemic, I asked my doctor if we could do appointments over the net and it was immediately rejected. During the pandemic, when abled people were impacted, it was suddenly very easy to do appointments over the phone or the net. The same happened with the energy work classes I have been taking.

There is also the other side. The friends I have now understand and are supportive. My family now seems to understand. I have found doctors and others in the medical world who are knowledgeable, understanding, and supportive. I have had the opportunity to find my value independent of my activities in the world and what I produce. I have found more peace with what is, as it is, and even profound appreciation and gratitude for it. I have found a simpler and more natural way of exploring who and what I am, including meditation. I have found an even deeper appreciation for life and the simple pleasures and joy in life – including the sun, rain, a cup of tea, music, silence, and so on.

What causes CFS? Nobody knows for certain. It may be a combination of factors, or it could be just one simple one. In many cases, it seems to be triggered by a viral or bacterial infection, or other severe physical stress.

In my case, I suspect the CFS came about from a combination of a viral infection (Epstein-Barr) and possibly continued EB virus in my system, stress, mold, and perhaps genetics, although I don’t know for certain and I don’t know the mechanisms.

What helps? Since there is no medical solution, a holistic approach seems to be the best we can do. For me, what helps is a combination of… Reducing my schedule to a minimum. Quality rest – in silence and darkness and ideally in a cool room. Pacing – which includes resting before, during, and after any activity, and extra, and also schedule in rest days before and after any activity. Asking for help. Diet – which for me means eating fresh and whole foods low on the food chain as much as possible, and minimizing or avoiding dairy and refined and processed foods (especially sugars). Herbal medicine – Siberian ginseng, echinacea, etc. Ginger powder in hot water to help my digestion. Hot spices in food, like cayenne. A warm and sunny climate is best for me. Nature and being in nature. Mindful movements – for me, Breema, tai chi, and qigong seem to help the best. Simple pointers to help me notice and rest in and as my nature. Inquiry to examine stressful beliefs and find what’s more true for me. Energization through energy work, which in my case is Vortex Healing.

Will there eventually be a medical solution? Maybe, if we put money and time into research.

This is the initial announcement.

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