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

Hi @webdog, thanks for starting this discussion on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). I'd like to bring @jlfisher56 @kellye5 and @plshelpmyfatigue into this discussion. You may also be interested in members talking here:

- Constant Fatigue, 20 year old female https://connect.mayoclinic.org/discussion/constant-fatigue-20-year-old-female/

Fellow member and mentor, @johnbishop has posted this TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis. Have you seen it?
What happens when you have a disease doctors can’t diagnose https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

What symptoms does Valtrex + low-dose naltrexone help for you?

Thank you for including me. I will watch the TED this week. It is frustrating and depressing...I just sent my boss a picture of how I look tonight as proof of why I will be in later...I should not have to do that but with the CF and pain comes swollen eyes and a blistered face. Not what school children want to experience in their principal or that I can physically manage. So I have started documenting with photos as I improve and as I worsen...each time for my docs.

Yes thanks Colleen, I did see Jennifer Brea's TED talk and her movie Unrest. I can agree that ME/CFS is difficult to diagnose, as it took over 3 decades and dozens of doctors for me to get a diagnosis. According to the CDC, only 10% with ME/CFS are diagnosed.

Valtrex helps with the recurrent herpes outbreaks I used get on my lips and inside my nose. These outbreaks would be accompanied by various cognitive issues and flu-like symptoms. The low-dose naltrexone helps with sleep and also lessens the recurrent flu-like symptoms.

In theory, both treatments are also supposed to improve very low NK cell function. But I don't currently have a doctor that will retest for this.

Unlike Jennifer Brea, I don't have any body pain (just headaches), which is not uncommon for ME/CFS.

Sure, I have fatigue, but fatigue isn't really the biggest problem.

It's the cognitive dysfunction and muscle weakness, generally 12-36 hours after even mild exertion, that is most disabling to me (post-exertional malaise). Also, orthostatic intolerance makes it difficult to be upright for very long.

Does anyone here know of a Mayo doctor who can diagnose ME/CFS and/or another auto immune disease?
I don’t even know what type of doctor to look for..
To respond to your inquiry, Phoenix Rising is an online group of individuals dealing with ME/CFS and they keep abreast of the latest research and treatments.
Thanks!

Hi, @webdog -- I wanted to add my welcome to Mayo Clinic Connect. Like @colleenyoung, I think it's great you are starting this important discussion on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and its treatment.

@kellye5, thanks for joining this chat. That is a smart idea to send photos to your workplace so your boss can envision what you are experiencing. How have they been received?

@webdog, you mentioned orthostatic intolerance — challenges tolerating standing up with symptoms that get better when you lie down — makes it difficult to be upright for very long. Have you adapted your space to do activities lying down, like correspondence online and staying connected?

@lisalucier I'm almost completely housebound, so adapting my space isn't really an issue. I do spend a lot of time on the couch or reclining in bed. My computer chair is set to recline as far back as possible, and I keep my legs propped up to help with the orthostatic intolerance.

If I need to walk outside, I usually wear compression stockings, which help reduce symptoms of orthostatic intolerance for a bit. But they don't reduce post-exertional malaise.

Like most with ME/CFS, I can't work. I think 75% are unable to work. I don't think most people are aware how functionally disabling ME/CFS is. Or that it has much lower quality of life scores than even most "serious" diseases.

A few times in my life, I have been able to work a bit. In my previous part-time job, I'd sneak off to lie down when I could, which was never enough. I wasn't diagnosed, so I couldn't ask for accommodation or set up my workspace appropriately.

Not having a diagnosis for most of my life made living with my illness more difficult than it needed to be. It wasn't a lack of doctors: I saw dozens including many specialists. It's simply that very few doctors know how to correctly diagnose ME/CFS.

@sita Thanks for the Phoenix Rising info. I am familiar with this group, as well as the S4ME.info website.

Your primary care doctor can diagnose ME/CFS. The diagnostic criteria are on the CDC website. ME/CFS is no longer a diagnosis of exclusion.
https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
In summary, there are 3 required symptoms + 1 of 2 optional symptoms.

Required Symptoms:
1 substantial impairment in activity that lasts six months or more and is accompanied by fatigue
2 post-exertional malaise (PEM)
3 unrefreshing sleep

Plus at least 1 of 2 optional symptoms:
1 cognitive impairment or
2 orthostatic intolerance

I am happy to find this group. After over 6 years of seeking help, I was diagnosed with M.E. by a neurologist. My journey has been long and hard, as have most with this chronic and debility, systemic neurological illness. Was first diagnoised with MS, then not, then Myasthenia Gravis, put on Mestinon, which does help, then not. I have other, complex and puzzling symptoms such as Diplopia, Dysphagia Dysarthia and more. .Am now struggling with severe swallowing and speech issues. Recent appts and testing with Speech Therapist, three ENT drs diagnosed and documented swallowing and speech as severe and progressive. Recent consult with a new neuro: diagnosed with Dystonia, a Neurological movement disorder. She is referring me to NIH for evaluation and testing. I get discouraged and frustrated, then bounce back with new determination. Finding others with similar issues and challenges has bee so helpful, as I felt so alone with all of this before.
Elik

I so sorry for the challenges you are experiencing. I hope that you find an awesome, innovative and caring doctor who can help you!

Thanks so much for this information. Unfortunately getting my primary or any other doctor in NM to provide consistent care, is a challenge in NM. Getting a diagnosis seems impossible! I would so hope for another diagnosis rather than ME/CFS. ME/CFS is a terrible and terrifying diagnosis and disease to live with! My heart goes out to those who deal with this disease daily!