The first step is to be sure of what you are treating. There have been a number of definitions for ME/CFS over the years. ME is Myalgic Encephalomyelitis, and CFS is Chronic Fatigue Syndrome. Some patient advocates reckon there is a difference between the two, but I've never been clear on the exact details on that. In the literature, the two are considered the same and the term ME/CFS is used.
There are two recent criteria for diagnosing ME/CFS:
1. International Consensus Criteria http://onlinelibrary.wiley.
2. Institute of Medicine (IOM):
https://www.ncbi.nlm.nih.gov/
www.nationalacademies.org/hmd/
These are well worth a read. The main stand-out symptom is Post-Exertional Malaise (PEM), which seems to be unique to ME/CFS. But there are a bunch of other common ones such as brain fog, stimuli sensitivity, muscle pain, POTS/OI, swollen glands, digestive issues, disrupted sleep etc etc etc.
Research
There have been a bunch of research breakthroughs in recent months. Some highlights which are worth familiarising yourself with are:
* Hypometabolic state:
https://www.healthrising.org/
* Pyruvate dehydrogenase
https://www.healthrising.org/
* Calcium ion channels:
https://www.healthrising.org/
* Pyruvate kinase:
https://www.healthrising.org/
My rough explanation for what seems to be going on: the body undergoes some combination of stresses (infection, mental, gut, toxicity) and enters a hypometabolic state to protect itself. Due to a number of genetic/epigenetic predispositions (mitochondrial, methylation, autoimmune), the body gets stuck in this state, with a dysfunctional aerobic energy metabolism. Limited energy production has fall-out all over the place, particularly the gut and the nervous system which are major energy consumers. These dysfunctions may serve to maintain the disease condition.
Clinicians
There are a few CFS doctors that share their knowledge.
1. Ros Vallings has published probably the best and most comprehensive mainstream book on treating CFS, "Diagnosis and treatment of ME/CFS".
http://calicopublishing.co.nz/
2. Jacob Teitalbaum, author of Fatigued to Fantastic.
https://www.healthrising.org/
3. Sarah Myhill has a very detailed website with lots of detail on her treatment approach. She seems fairly alternative and has rubbed the authorities up the wrong way ...
http://www.drmyhill.co.uk/
4. Chris Kresser doesn't specialise in CFS, but I really like his approach to medicine (holistic but evidence-based). He has a great blog and podcasts.
https://chriskresser.com/5-
Treatments
Pacing
This is the most effective treatment there is for CFS, though it is more of a management strategy. The premise is to work out your "energy envelope" and then not to exceed that. Sounds simple, but it's actually feckin' hard to do. The first reason is the your energy envelope on any given day way vary. The second is that you have no timely feedback to indicate when you've gone outside your envelope. Post-exertional malaise doesn't kick in until 24-48 hours after the exertion, so you don't know until it's (way) too late.
A recent development is to use heart rate monitoring to aid pacing. The idea is that you need to avoid using your aerobic energy metabolism (coz it's broke, see above). So you work out you threshold (roughly 60% of max heart rate) and do your best to stay below that. This seems to work well for a subset of patients, particularly the more seriously ill ones. An extension of this is to measure heart rate variability (HRV), which is an indicator "vagal tone", or of how well your autonomic nervous system is working. If you have overdone it then your HRV will be low, and you should take it easy. Athletes use this to manage over-training. Seems good in principle but in practice it doesn't seem to be so clear cut.
Meditation
Second on the list of effectiveness is meditation. This probably works because it calms the autonomic nervous system, which tends to be overwrought in ME/CFS. I have started doing a thing called "coherent breathing" which is a way of breathing which increases your HRV - 5 seconds in, 5 seconds out. It leaves me feeling much calmer than meditating usually does, and I find it easier to do.
Lymph
Apparently CFSers have "sluggish lymph" and can benefit from treatments that help get the lymph moving. I have had both manual lymph drainage and craniosacral therapy and am totally knocked out for a few days by both (in a good way). So something is going on, and I like to think it is a good thing (clearing out toxins etc). Craniosacral therapy is a pseudoscietific though ...
Third on the list of effective treatments in something called the Perrin technique, which is a form manual lymphatic drainage specifically for treating CFS. My mate Phil is going to learn how to do it in May, so I'll let you know what I discover.
Sleep
CFSers have very poor sleep which is a major barrier to recovery. Good sleep hygiene is critical. I snore and intend to get a sleep study done to exclude sleep apnea and see if there's anything else that can be done.
Gut
CFSers spend a lot of time messing with their diets. There is no one answer, but many benefit from a low-carb diet. Others find avoiding certain food chemicals to be helpful.
* GAPS
* Paleo Autoimmune Protocol
* SCD
* FODMAP avoidance - particularly for IBS
* RPAH Elimination diet - salicyclates, amines, glutamates
* low-oxalate diet
It's hard to say if dysbiosis and/or intestinal permability is a cause of CFS or a result of another mechanism (e.g. hypometabolism). But it seems reasonable that treating it would improve nutrient absorption and reduce inflammation, which may help the body heal itself.
POTS/OI
POTS (Postural orthostatic tachycardia syndrome) and OI (orthostatic intolerance) are common problems for a subset of CFSers. This seems to be tied to autonomic dysfunction. Treatments are drinking lots of electrolyte, eating lots of salt, compression stockings and blood pressure medication.
My resting heart rate is about 55bpm. When I stand up it shoots up to 105bpm but comes down to about 80 within a few minutes. I don't think I would qualify for POTS because the high heart rate isn't sustained, but would be close (I intend to get this checked out by a GP). I don't think my blood pressure is too much of a problem (rarely get dizzy). In any case I have been making my own electrolyte drinks and adding lots of salt. Once it cools down I will try some compression stockings or Skins.
Methylation
This is a treatment approach many CFSers have pursued, though it may just have been flavour of the month. Having said that, I think recent research is showing that CFSers have a greater number of SNP mutations than normal in these areas. I've had the 23andMe test done and have a couple of important homozygous mutations (MTHFR 1298 and CBS), but I think I need to get further tests done to work out if these are actually causing a problem. Useful tests are homocysteine and organic acids - anything else you recommend? This is quite the rabbit hole to go down ... I have tried B12, 5-MTHF and a few other things but found they just made me wired. I think I have been approaching this blind and need more hard numbers to work with, and an expert wouldn't go astray!
Anti-virals
Some research has shown benefit from treating patients with anti-virals, with the theory being that we have viruses that aren't active in the blood, but elsewhere (e.g. spinal cord, vagus nerve, gut). One study treated EBC, CMV and HHV-6:
http://phoenixrising.me/
Another doctor has been using oxymatrine as an anti-viral with some success:
https://www.healthrising.org/
Immunotherapy
Cancer researchers in Norway found that Rituximab has been effective at treating CFS. THey are doing clinic trials at the moment. It kills B-cells, of which there can be too many in CFS.
https://emerge.org.au/
Lyme
Lyme disease is a bit controversial in Aus, but there are doctors treating for it. People with CFS sometimes turn out to have Lyme, or something Lyme-like. Treatment is a shitload of antibiotics for a long time, which is expensive and seems risky! I've had a test for Lyme, but not the one from the US which is supposedly more sensitive.
There are other chronic bacteria infections that might be an issue for CFSers (e.g. Mycroplasma).
Amygdala retraining
There are neurolinguistic techniques that attempt to retrain the brain out of it's chronically wired mode. I did the Gupta AMygdala Retraining programme about a year into my illness and found it helpful for breaking out of the sickness mentality (obsessing about symptoms etc). Beyond that I doubt that it gets to the cause of the illness. There have been a few small studies that show some benefit.
Toxicity
Exposure to toxins may be a trigger in some CFS cases, and detoxification can be impaired in those with CFS. Heavy metals and mould are two prime candidates, though there are plenty more nasty chemicals out there. Some people with CFS develop Multiple Chemical Sensitivity (MCS) which means they have to avoid *everything*. One approach in CFS is to move to the desert and replace all your clothes to avoid mould!
I haven't been tested for heavy metals (except for lead). What would be the best test for this? Also, do you know anything about testing for mould? I was exposed to mould just before I got sick, and our rental at Wellesley St had a leaky roof with mould problems.
Mitochondria
Lots of supplements used by CFSers aim to provide mitochondria support, and have some research bonafides Ones that come up often are CoQ10, D-Ribose, NADH, Acetyl-carnitine. I've tried some of these but not sure if all at once.
Thyroid and adrenals
These often have problems, though again I suspect they are the result of an underlying problem rather than the cause. Hypothyroidism is common, and "adrenal fatigue" gets a lot of attention (though I'm not sure is that is a proper disease or not). My thyroid isn't perfect: good TSH, free T4 and free T3 (even according to tighter "alternative" ranges) but my reverse T3 is high and I have TPO antibodies. My reading suggests that the reverse T3 could be due to high stress (which is a given with CFS). The TPO antibodies could be because my Mum has Hashimoto's, and apparently that can show up in my antibodies. I take iodine and selenium to provide support for my thyroid, and have tried tyrosine before. I've also has DHEA-S tested, which was fine, but haven't done cortisol. I think it is best to do a 24 hour cortisol/DHEA test to pick up adrenal dysfunction.
Copper and pyrroles
I don't know much about this, but see it mentioned from time to time on the forums. Not sure how much evidence there is for pyroluria?
https://www.drbillsukala.com.
