ME/CFS and Fibromyalgia Doctors’ and Researchers’ Report

Health Rising does not endorse any approaches to treating COVID-19. These resources are provided for your information only. 

Check out talks and tips from Chronic Fatigue Syndrome and Fibromyalgia Doctors on dealing with the coronavirus.

Dr. Nancy Klimas – Institute for Neuroimmune Medicine – Nova Southeastern University

Some suggestions:

Enhance immune function by enhancing their energy stores and reducing oxidative stress with CoQ10 (ubiquinol 200 mg/day during high stress times), NAC (600 mg/1-2x’s or more a day (not at bedtime), glutathione (liposomal), Vitamin C, carnitine.

Do that first to build the cells up and then add methyl or hydroxy B-12, methylfolate, and immunovir from Canada (more potent), or isoprinosine in the U.S. to enhance NK cell cytotoxicity (be sure to hydrate well and take two days off weekly to prevent increased uric acid levels). Can help with respiratory tract infections.

Regarding Going to a Testing Center – “Right now (March 29th) there are not enough tests to test everyone, and if you are not very sick they are sending you away.  If you go to a testing center, and you are sick enough that they tested (fever, cough, flu-like symptoms), then there is one chance in 4 you will be positive, but if you go to a testing center you also have 1 chance in 4 of standing next to someone who is positive and coughing virus in the vicinity.

So go get tested if you think you are too sick to stay home, that is if you are short of breath (can’t hold your breath for 10 seconds), are flu-like and have a higher than your normal temperature.

 

pulse oximeter for oxygen saturation testing

Pulse oximeters tell how much oxygen is in your blood. They’re cheap and easy to use (but don’t try right now to get one on Amazon.)

Pulse Oximeter – At our local ER, the screening test is a O2 saturation test. Normal is 96% to 100, but if it’s below 92% you will be short of breath and you will be admitted.   So if you have a pulse oximeter or oxygen saturation meter (they cost about $30 at the local pharmacy or online), or you download the app on your smartphone, you might reassure yourself enough to treat this at home.

(Cort’s Note: I was unable to order a pulse oximeter from Amazon – which seems to be having considerable problems with deliveries. I was able to order one quickly from Walmart, however.)

Prognosis – Much like the flu, you won’t be better as quickly as healthier people – plan for 4- 6 weeks but if you get sick bear in mind that the worst part is usually the first week.

Use Grocery Delivery – Take the STAY AWAY FROM PEOPLE advice seriously, using grocery delivery, washing your hands obsessively, taking care about who comes in and out of your home.  This is really serious, and it’s way better to never get it than cope with what to do once you have it.”

Dr. Lucinda Bateman, Suzanne Vernon PhD and Dr. Yellman at the Bateman Horne Center

Some notes from the talk:

Like Dr. Klimas (below), Dr. Bateman stated there’s no need to seek medical care or testing unless your symptoms get severe. When asked how to differentiate your symptoms from COVID-19 she said if you have the virus you will know.

As more treatments become available, testing for the virus will become more important as a positive test will open the door to them, but for right now – if you just have normal flu-like symptoms, there’s no need to get tested, and as Dr. Klimas points out (below) a good reason not to.

Dr. Bateman emphasized that drug treatments are rapidly becoming available. At least 14 possible drugs are being tested and 20 different companies are working furiously on a vaccine. The medical profession is moving faster on the coronavirus than it has ever moved before.

The Bateman Horne Center has created a COVID-19 resource page which includes a variety of documents including one that should help doctors better manage an ME/CFS patient’s case with COVID-19 (medical considerations letter):

Dr. Hyams – ME/CFS Specialist in Vancouver, BC. Has worked with the Complex Chronic Disease Program thru Women’s Hospital in Vancouver

 Dr. Teitelbaum – has been treating people with ME/CFS and FM for decades. In response to this question “But won’t my having immune problems with fibromyalgia make me more prone to it killing me?”, he stated

“No. I have effectively treated thousands of people with fibromyalgia over the last 45 years, and I’ve never seen anyone die from having the flu. They may have felt miserable, and it may have taken a while for it to go away, but I’ve never seen it cause permanent harm to anyone.”

Read more of Dr. Teitelbaum’s ideas here.

Courtney Craig – Nutritionist / Recovered ME/CFS Patient

Courtney Craig doesn’t think any supplement is up to battling the coronavirus.

Courtney Craig was able to use integrative and traditional medicine to recover from ME/CFS, but COVID-19 – that’s an entirely different ballgame. She doesn’t recommend any supplements.

There is NO evidence that any herbal or vitamin product, or dietary measure can prevent or treat this particular corona virus.

and recommends not taking on a new supplement regimen now.

Now is not the time to change your routines. Do not attempt a new ME/CFS-specific supplement, dietary plan, or fasting protocol. Keep your condition as stable as possible. Avoid activities that may trigger post-exertional malaise.

Instead, focus on being safe and as healthy as possible. Check out her “Chronic Fatigue Syndrome in the Time of COVID-19” post.

Dr. Jockers – Dr. Jockers “Natural Solutions” title might seem a bit much, but he presents an excellent overview of the virus plus some common-sense alternative health suggestions.

Dr. Maya Shetreat – provides a series on boosting your immune system and lungs and reducing your stress levels.

Dr. Jill Carnahan – the well-known functional medicine doc on “How to protect yourself.”

The Lipkin Files

Ian Lipkin PhD – a world renowned virologist (and ME/CFS researcher) is a trusted voice. He also came down with COVID-19. Check out several interviews with Lipkin.

TWiV Special: Conversation with a COVID-19 patient, Ian Lipkin

Coronavirus Central – Resources From Health Rising

  • Tracking – check out the multiplicity of ways the virus is being tracked: it’s spread, it’s infectious rate, the deaths it’s causing, efforts to model it’s affects…
  • Advice From ME/CFS/FM Doctors and Researchers – ME/CFS/FM doctors and researchers on advice how to safe and support your health
  • Staying Safe – how to stay safe including hand washing, nasal irrigation, disinfecting, making a mask, plus – is the virus being aerosolized? How long the virus is alive on different surfaces, and does the amount of virus present matter?
  • Treatments – Check out the astonishing number of COVID-19 treatment trials underway.
  • Apps – be part of the solution; use apps that help us understand the spread of the virus plus use apps that can warn you if you’ve been in contact with someone infected.
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