ME/CFS Alert

In this episode, Llewellyn King interviews Dr. Mache Seibel, a Harvard Medical School faculty member who practices at Beth Israel Deaconess Medical Center in Boston, Massachusetts. His specialty is women's health and menopause, and he has treated many patients with ME. He is insightful and compelling.
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[@katierobertsfnp6403]

Dear Mr. Llewelyn King, and Dr. Mache Seibel, I sincerely appreciate your expending your valuable time to educate us. I acutely ceased menstruating at age 44 years old. My history includes a diagnostic laparotomy at 15 years old, due to excruciating lower abdominal pain, and significantly heavy periods. Pathology revealed that indeed, I manifested endometriosis. As well, was diagnosed with interstitial cystitis after my first diagnosis of Triple Negative Breast Cancer, at age 46 years old. Digesting your revolutionary, eye-opening correlations, reinforces the notion that I should probably get my hormone levels investigated, sooner than later. Lastly, I was a highly-functioning person until I contracted an upper respiratory illness in May 2013, while undergoing chemotherapy for Triple Negative Breast Cancer. I was hospitalized for 4-5 days with the worst, unrelenting, headaches of my life. It was this precise occurrence that I have never remotely been a shadow of the human I previously was. It is my intention through expressing my personal experiences, that maybe even one sufferer of ME/CFS, can cobble their symptoms together, thus making more sense, out of a terrible situation. KT [e-mail] Providence, RI 02906

[@persephonespomegranate]

I’m interested in whether or not there’s a connection between endometriosis and ME/CFS. Seems a lot of us have severe endo as well. (edit: ha! Just got to the part in the video where he says he sees a lot of patients with both so there’s likely a correlation at the very least). I only had to have surgery once, thankfully (I had a phenomenal surgeon) and it’s largely under control now pain-wise with Visanne (I’m one of the lucky ones who’s period stopped completely with the drug - haven’t bled in 9 years; I’m 44 now) - but most women with severe endo have a much tougher battle. Not that my path has been easy by any stretch - endo got so bad I had to walk away from my career I had worked so hard to achieve because of it - but thankfully treatment over time has been successful. I just wish I could say the same for ME!

[@JenniferMatthews]

This is very interesting because I had menopause at 49. And I had extremely heavy periods and pelvic pain. Shortly after I started sleeping for days at a time and had to retire early. Maybe there is a connection. Although I know some men have CFS too.

[@IslandLife273]

Cannabis helps ease pain. The sativa strain. Please help this be legalised in the UK. No one has prescribed it on NHS yet.

[@dirkkatz172]

The cause for me was the microwave oven. This may sound unbelievable: the internet states that the use is harmless or that the danger is cancer or a reduction in vitamins. The first consequences were: pain in the neck, fatigue, sore throat, depression, ..... After 3 months without a microwave oven these symptoms disappeared. Consequences are greater the closer the microwave oven is to you: if the oven is right next to your dining table, for example. If you bring this to your members' attention, those who wish can give it a try and let you know about their experiences. Everyone can now participate in the study! People will not think much of CFS. Organs are not damaged. It looks more like an internal strangulation. I don't know if that can be found. The muscles tense under the influence of microwaves (microwave), Hence the pain and the intestines are too tense, which makes digestion poor and too few vitamins are absorbed. In the throat one has pain due to the tensioning of the muscles there. Be careful not to cure other diseases with fatigue for CFS.

[@ksize3147]

Calling it fatigue, or being tired lessens( stigmatizes) it's importance. It's more than being tired, it's more than fatigue, it's more than exhaustion....There needs to be a better word to describe the toll it takes on the individual and the change in their life. I call my flares J.E E.T.E.......Just. Enough. Energy.To.Exist.........

[@katierobertsfnp6403]

Dear K Size, I wish to acknowledge and agree with your frustration that there is not a word or phrase that accurately captures the life-changing, utter, disabling, lack of energy, that ME/CFS bestows upon us. Thank you for sharing your (accurate!!) acronym. When I am treading water to make it through PEM (post-exertional malaise), it can take significant effort just to breathe. I’d also like to report that when I experience flares, my blood circulation feels like it’s cement vs. blood. Wishing you better days. KT

[@danieladanielsen]

I don't think that ME COULD BE CONFUSED WITH MENOPAUSE