Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments

@colleenyoung
I decided to post here since there isn't a separate group for Myalgic myeloencephalitis/CFS. Was wondering if anyone on Connect would have a link or resource to finding an appropriate provider to diagnose and treat ME/CFS. I have used the ILADS website already. Someone also suggested the CFIDS website, but I see no links provided for searching for an informed, caring provider who will listen and support!
Thank you for any help!

Eating well for Chronic fatigue is difficult. Diagnosed with fibromyalgia, I simply don’t find that helpful. Far better to pull the symptoms apart and focus on one while recognizing other problems impede any progress. I have IBS almost under control but I eat carefully. I also have chronic pain. Between pain and fatigue although I purchase food carefully, I am often too tired to prepare it. I’m considering a group of carefully researched supplements that I would hope might give me a modest boost until I am able to cook more carefully.
Has anyone had any luck with supplementing their diet pretty significantly. Thanks for any guidance.

I can't speak about Chronic Fatigue, but I have had a period of illness where the fatigue was overwhelming and my appetite was zero.
Here are a few ways that I coped, you may have to adjust for your IBS limits:
Smoothies - what ever you eat can most likely be made into one (I haven't tried meat, but my all-liquid friend does chicken & turkey) My go-to was fruit, carrots, yogurt (my daughter uses non-dairy versions like coconut, soy or oatmilk), avocado, Garden of Life Organic Protein & Greens powder - blended on high speed. I would make a blenderful, and it made 4 meal replacements.

Orgain Protein Shakes (the non-dairy or dairy if you can)

Soups or casseroles - make when you feel good, freeze individual servings for reheating on bad days.

To supplement -

Any nuts you can tolerate - in butter form if you need - cashews are my choice

Yogurt or yogurt substitutes with peeled soft fruit like peaches or mangoes (I buy frozen chunks and mix in so they don't spoil on the counter)

Avocado topped with a little oil, dressing or vinegar

Eggs - we keep a few hard-boiled in the refrigerator

Rolled up sliced meats - I put a bit of cheese or pickle in the middle, or spread with mustard & roll up

Rice cakes topped with hummus/nut butter or carrots/pretzels dipped in hummus/nut butter

I hope some of these help.
Sue

@migizi. I would also like to thank you for those suggestions. I have lost a substantial amount of weight this past year and there has been no known cause found by doctors…..a nutritionist is suggesting I eat more times per day and add protein….between nebulizing twice a day (bronchiectasis); mustering up the energy for a 1 1/2 mile walk a day; and my other chronic conditions (ie, chronic migraines, fibromyalgia, arthritis, my ongoing left foot recovery) and fatigue; my appetite is poor, at best….I’m trying, but my upper abdomen does not like the pressure and I fill up quickly.

When I was on the "Big 3" antibiotics for MAC (I have bronchiectasis and asthma as well) I was losing weight like crazy -and I didn't need to. I was eating a small high-protein or high density snack every 1-2 hours, whether I wanted to or not. I tolerate cheese well, so at least 1 snack per day was one ounce of cheese - I cut or bought pre-sized chunks, so it was very easy to grab and go. Another was a small clementine or apple - again, very easy. To avoid digestive issues, my servings were between 1/4 cup and 1/2 cup at a time. I also found low-sodium V8 juice palatable after I quit the antibiotics, but not while taking them.
Sue

Clutch, have you considered seeking an appointment at Mayo Clinic to consult with ME/CFS specialists? Here is the contact information http://mayocl.in/1mtmR63

@colleenyoung ,
Yes, several years ago, when it was my first attempt to get a Mayo appointment. I followed up with a phone call to an appointment coordinator. She basically told me they were not accepting patients that had a primary symptom of "chronic fatigue". I don't know if much has changed but I did read @webdog's post about how Mayo had not followed the CDC guidelines for diagnosis and treatment of ME/CFS. That was 3 years ago. Does anyone have updates on this issue?

Mayo Clinic follows CDC guidelines for diagnosis and treatment of ME/CFS. I had the opportunity to listen to a talk by specialist in ME/CFS at Mayo Clinic, who reaffirmed this when I posed the question during the Q&A.

It is possible that appointments are not available sometimes. Unfortunately Mayo Clinic receives more requests for appointments than available openings. This doesn't mean you shouldn't try again.

@colleenyoung,
Thank you for that update. That's certainly good information to know!
And thank you again for your continued commitment, support and hard work that you give Mayo Connect. A thankless job, most often. It is by far one of the best such forums out there. Administrators like you make it so!

Thank you for mentioning this. I wanted to mention the same. There are lots of good reasons to seek therapy while you go thru this and CBT is useful, but only to a degree. Because of the deep fatigue I wish there was more help with diet. I live alone and cannot be fulfilling nutritional requirements. What to do. How far can very expensive supplements go in relieving my lack? Feedback please.