The angst of trying to find a physician for ME/CFS

So, how do we find a doctor who believes in cfs and can check into some of this for us. This site is amazing information. – From Facebook Post

Ken Lassesen There are only handful of MDs in every jurisdiction unfortunately. In the province of British Columbia (5 million people) there was just ONE until she left. They are now back up to two!!!!

” The estimated prevalence of ME/CFS in our study ranges from 519 to 1,038/100,000, ” [CDC] so we have perhaps 5,000 patients for these MDs, all being time consuming. A General practise MD usually have 1500-2000 patients (most of them healthy and just seen once a year). For ME/CFS, the patients numbers drop down greatly.

My first 2 physicians were a GP/Surgeon who diagnosis (because of that chronic CFS cough) was antibiotic resistant walking pneumonia and put me on rotating antibiotics (the right thing!)… and a family practice physician (who I saw 2 weeks before onset). With her, I had to literally lead her thru the treatment plan (Jadin’s rotating antibiotics and Hemex coagulation therapy) and the literature once she accepted the diagnosis. I even arranged conference calls with leading researchers at that time for her.

#3 ended up being a ND that worked with a Lyme MD (very long wait list to see the MD), there was a lot of negotiation on the treatment plan, but it worked. In my jurisdiction NDs may prescribe antibiotics — that is not true everywhere.

The KEY is getting a physician that is willing to learn and read well summarize information.

#4 physician was a loss… sorry not standard of care… changed to a new physician, ex-Armed Forces MD (thus seen PTSD a lot), she is very interested in the microbiome model. The remission was not due to her, but instead of “physician heal thyself” became it became Artificial Intelligence heal me!.

With that said, many “CFS physicians” can be locked into a certain view of ME/CFS (which can be 20 years stale). A few people with that speciality still believe it’s a psychological condition.

https://www.mefm.bc.ca/for-health-care-providers

My facebook response

The purpose of this blog containing over 1200 documented posts citing existing medical literature was to try to give an alternative path when there is no specialist physician available.

The path premise is to use the data here (or suggestions from the microbiome prescription site – after getting a 16s analysis). 16s analysis DOES NOT REQUIRE A MD’S REQUISITION!!!! They are direct to retail (and expect some MDs to raise their eyebrows!). The cost is often the same as a few bottles of probiotics.

Use this information and present the changes that you are planning to do to your physician and ask if they have any concerns with doing those. Most MD’s will look at it and shrug. If there have any questions on an item— tell them you will bring in the study next time (I link to all of the studies!).

So, technically you are under a MD’s supervision but have 0% dependency on him generating a treatment plan.

For those of you with brain fog, you may wish to get a significant other or friend to sort thru things.

I suggest these links as a starting point:

Remember that the greatest cause of back-sliding is forgetting how you were when symptoms improve and you stop taking items because they appear to no longer help. The second cause is absent mindedness.