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

Hello, this is a very interesting question, and very common to those of us with conditions that cause problems with fatigue and poor appetite. I was on antibiotic therapy for a long time that caused weight loss, lack of appetite and constant fatigue. I have a friend who had throat cancer and eats an all-liquid diet.

She was invaluable in teaching me to plan/sneak nutrition and extra calories into everything I eat, to prepare several meal portions at a time and refrigerate or freeze, and that most expensive supplements are not necessary.

Some tips:
- Glucerna, Orgain or similar high-nutrition/low sugar drinks. Find one or 2 you like and keep them handy for when you can't possibly get up the energy to fix a meal (save the bottles) Low sodium V8 juice
- Smoothies - made with loads of fruits and vegetables (frozen works too), yogurt if you tolerate dairy, tofu if you do not, and a good protein powder - I make 2 liters and put in 8 oz bottles in frig/freezer. One is a snack or small meal.
- Homemade soup - no recipe needed - a protein (meat or beans) vegetables (your choice) water and seasonings - simmer until done, package single servings and freeze.
- Durable fruit like apples & clementines, veggies like carrots - easy to peel & eat, store well.
- Precooked chicken - frozen or canned, and frozen vegetable mixes - stir together, microwave or stir fry, season to taste.
- Eggs in any form and cheeses sticks or 1oz prepackaged cheeses, dry roasted nuts - great protein, keep well, minimum prep.
- Frozen meals - go online, read the labels on the healthy choices, find a few and try. Don't ignore the "smaller" labels like Amy's and some of the ethnic food choices - just watch the fat & sodium.
- Meals on Wheels if it is available by you and you qualify.

Many, many low cook/no cook options. Try to plan prep for your least-fatigued time of day, clean up right away, and plan a rest afterwards.
And if you can, order and have your food delivered to save your energy. Or order for curbside pickup.

Does this help - can you see one or two ideas here to try?
Sue

Thank you. I’m lucky enough to have help two days per week and because I eat little, 4 healthy meals are a lot. You’ve encouraged me to begin again to prepare ahead and save. I appreciate your help.

I wanted to update the discussion, to say that for those interested Stanford University has a ME/CFS clinic that looks fantastic, it requires a referral. . I wish Mayo was doing more with this but it seems not, though I did find the centalization 3 day workshop to be great.

Colleen,
Thank you for your recommendations. However, what I think those of us who have ME/CFS are looking for is an ME/CFS connect group that deals
just with this disease. One of the people who responded to my earlier post said "We are the forgotten ones." She is absolutely correct. I think if there were some place where we could talk to each other online, we'd all feel better and we might just come up with something. The doctors certainly haven't and I've visited two nationally known experts. Years ago I also participated in a Harvard study, gave blood, did a psychological test, and nothing developed from this study. It lasted between three and five years and was centered at Brigham Hospital. It would be wonderful if Mayo Connect gave us our own talk outlet. Please consider this. Please know that this is a distinct disease and shouldn't be lumped with other post-viral syndromes. I think those of us who are afflicted deserve to be heard and Mayo is the place to listen. Again, thank you for your time and interest.

well, what is REALLY going on with Mayo? They will NOT acknowledge that ME is a real disabling condition for millions of people, mostly women!!

@louisequale You sound angry and I don’t blame you. So many conditions are just not recognized for their serious effect on persons and need for help. You’ve certainly come to the right place to have a rant! I wish i had an answer for you, but i don’t. I have asked one of the moderators to help, if they can. In the meantime did you know that Stanford University hospital system has a ME/CFS clinic? Ill see if i can find the link.
Where are you currently receiving treatment?

@louisequale - I am unsure what you mean - the link you included in your post does not work. Can you explain whether you were trying to request an appointment on line and had a problem?

Here is a recent Mayo article about the diagnosis and treatment of ME/CFS: https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
Have you seen it before?
Sue

Are there any open discussions about ME/CFS or symptoms that are similar to the ones experienced by those with ME/CFS?

I currently have no diagnosis, but regularly experienced symptoms like those of ME/CFS. Just looking for advice on how to manage the symptoms from others who have similar issues.

Thank you.

Hi @witsend, yes. I've merged your post to this discussion group about ME/CFS to connect you with others like @clutch @sueinmn @becsbuddy @rarelybees2889 @chaun2947 and others who are dealing with ME/CFS.

What are your primary symptoms that you find challenging?

Thank you for the assistance, Colleen!

I’ve never been diagnosed with ME/CFS. I’ve done a lot of research over a period of many years, and ME/CFS is the only thing I’ve found that explains everything. So I was hoping if I start treating my symptoms with what helps others, maybe I could do better.

In a general way, the most burdensome issues are mental fog, muscle weakness, and exhaustion that does not go away even with rest.

Lately I’ve been having a period of extra difficulty and symptoms: shortness of breath, dizziness, headache, extra tired and weak (more so than my “normal” tiredness and weakness), and frustration/depression over being unproductive and feeling useless and hopeless.

Does anyone else find that they feel guilty, useless or full of shame for not being physically or mentally able to do what they feel like they should, or that others seem to do easily?