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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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educating your doctor and you

Some patients report that their doctors ask for information about ME/CFS. This list helps fill that request. It also includes information for ME/CFS patients who want to understand the illness. Keep in mind that there are no high-probability treatments for ME/CFS. All we have are treatments that help some people. I've attached it here as a PDF. It's still a work in progress.

Please be aware that some of us never mention ME/CFS to our doctors. We have found that once we do that, the doctor no longer takes our individual symptoms seriously, and they tend to see us as fatigued people. So we describe the symptoms without mentioning ME/CFS.

reading list updated Dec. 8, 2018


Thanks, Andrew. Educating our doctors is important. I can't copy and past from a PDF though - can anyone tell me how to do it?

I'd like to add Gerwyn's guide here and the Canadian guidelines for medical practitioners - available for 80p per copy (full colour, swish edition) plus 1 p&p in the UK at present from

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Hi Jace. I'm not sure what problem you are having with the PDF. On my computer if I want to open it from this website I just click on it. My browser gives me the choice to view it or save it to my computer. That's all you need to look at it, save it, print it, etc.

If I wanted to modify it for your own use, then you would copy and paste its contents into your word processor. To do this, first open the PDF, go Edit|Select All. Then go to Edit|Copy. Then paste into your word processor.

If you simply can't open it, you need the free Adobe Reader which is available at the Adobe web site.
Hi Andrew,

Durr, am I dumb. If anyone has the same trouble that I did, at the top right of Andrew's pdf, click on A in the tool mode box. Then I could copy and paste.

I think it is important not to overwhelm our doctors with information. So this very useful list can be used to choose a point of information at a time, that you think your doctor needs to know. Would you agree? Doctors are busy people, after all.
Hi Jace. I agree the list looks like too much for a busy doctor. And we all need to decide how to present information to our doctors.

I think what I'll try next is create a reading plan that suggests what to read first and how to break this up. That might make the list look less intimidating.
I have no desire to educate a doctor. IF the doctor does not know about my condition, I will not go to him/her. It's too much work for me to educate a professional. I go to a doctor because I hope they know more than me!!

However, thank you for posting this. It took time and effort and that is much appreciated.
I'm still working on my lit review/reader for my doctor and will post mine when I've finished it. Appreciate some of the abstracts you've got in yours - very helpful!

Like jace, my biggest concern has been how to balance the complexity of this illness, the complete dearth of knowledge among physicians (most of whom do want to do right by their patients), and the fact that my doctor works 10-11 hour days. What I find my doctor really wants to know is, what can I prescribe? While we tend to want to give our doctors the latest research so that he/she will validate how disabled and sick we are, our doctors tend to want to know what to do right now. And that's what has been difficult to get my hands on, particularly with regard to finding/treating infections. Being on Medicaid makes this even more difficult because it will not cover the treatment of "chronic fatigue syndrome" nor will it cover many of the tests that a lot of people on this forum have access to.

Btw, the Canadian Consensus Document can be found in its original form (JCFS article) as a downloadable PDF here.
Michelle, good points about the reality of working with a doctor. But if you want to research antibiotics, the medication book on my list could be a place to start. Interestingly, the woman who wrote the book is a CFS patient who was getting worse and worse over time. Her decline was only stopped after a doctor agreed to prescribe what she requested. And I guess we are often stuck in this position.

BTW, the Canadian Consensus document at the link you provided is incomplete. It is cut off after page 36. There's a link to the full version in my reading list.
Ahh! I'm so glad you said that! I'd downloaded the MESA PDF of CCD and skimmed through it awhile back, but hadn't noticed that it cut off at 36. Just noticed it didn't mention much about medications. When I'd been liked to the Canandian ME site, I'd only ever seen CCD in an HTML page, which I didn't feel comfortable sharing with my doctor. But since you'd mentioned a PDF, I scrolled down and clicked. Voila! Over 100 pages and lots of info about drugs! Thanks. :)

If only they could update the CCD...sigh...
I made some changes to the list that I hope make it more user-friendly. I'm much happier with it now. If I revise the list in the future I will probably not post about it. I'll just change the "modified" note in the first message.
I've ended up revising the reading list several times, including fixing dead links. You can see if you have the latest version by checking where it says: "reading list updated"

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