13. How To Get Well From ME (CFS)? 10 Areas Of Treatment To Look At

Although there isn’t yet a cure for ME (Myalgic Encephalomyelitis, which has also been called Chronic Fatigue Syndrome or CFS), or any one treatment that would help everyone with ME to get well, there a lot of things which really are helping different people to manage the illness as well as possible. And many people who were diagnosed with ME - some of them were bed bound with all of the most severe symptoms for years - have partly or even fully recovered. Here is an overview of 10 main areas to look at for approaching treatments for ME, the things which I think have really helped me, or others with ME - whilst remembering that not everyone benefits from the same things.

 

Hello! Here on GetWellFromME.com, so far I’ve been talking about the symptoms of Myalgic Encephalomyelitis (which has also been called Chronic Fatigue Syndrome), and the devastating effect it has on millions of people’s lives, as well as some of the main theories about what might cause it.

Sadly, there isn’t yet a cure, or any one treatment that would help everyone with ME to get well. But there a lot of things, which I’m about to talk about in 10 different areas, which really are helping different people to manage the illness as well as possible. And I do know there are so many people who were diagnosed with ME - some of them were bed bound with all of the most severe symptoms for years - who have partly or even fully recovered - feeling well and energetic, working part time, or full time, going into high powered careers, people returning to dancing or sport, going out with their friends, and travelling the world!

After speaking to, and reading about, hundreds of other people with ME, I do believe it could be too simplistic to think that it is just one illness. There are so many similar stories about how people got ill, and especially of course about the defining symptoms - not just fatigue but an unbearable sickly exhaustion after any exertion or activity, measurable cognitive problems with how the brain works, the autonomic nervous system not functioning properly, persistent immune symptoms, and so on. But there are also so many various combinations of triggers that have made people ill, other symptoms that different people experience, and how people respond to different treatments.

It has been suggested that maybe more than a third of people who have been told that they have ME or ‘chronic fatigue syndrome’ by their doctors, have actually been misdiagnosed, and have other different medical conditions - such as depression, chronic Lyme infection, POTS, MS, thyroid illnesses, coeliac, and dozens of others. That’s why it’s so important to get the right diagnosis early on, and to get the most appropriate treatments.

In my previous video in this series, I talked about how I think someone with ME might become ill. For someone who has inherited genes which could make them more likely to get ME, several different interrelated systems of the body all seem to go wrong - the hypothalamus, brain and nervous system, and hormones; the mitochondria, which produce energy in every cell throughout the body; the immune system; the gut and liver; the heart and blood circulation; and the mind and emotions. These could go wrong when they are unable to stand up to a combination of loads put on them - usually a severe virus, sometimes other infections or vaccinations; exposure to chemical toxins or other environmental factors; physical injury or surgery; or major life events and emotional pressures. What I believe still isn’t really known, is whether that is the full story to explain everyone who has ME, or whether there is an underlying cause, in all, or in just some, of the cases - an unknown virus, or retrovirus, or some other ongoing problem affecting the nervous system and immune system. I think that serious research must be stepped up to try to identify and understand this underlying mechanism, whatever it is, with the hope of finding cures.

But otherwise, at the moment, I see it as a kind of jigsaw puzzle. Trying to identify and understand what has gone wrong, for each one of us, helps us to know how best to deal with it. So then we try to remove whichever loads or triggers are there, and aim to restore an equilibrium where we can become healthy again, trying to strengthen our bodies’ own resilience in the immune system, mitochondria, detoxification, and everything else.

With a lot of general long term fatigue that might not be ME, and with post-viral fatigue, they might simply correct themselves or recover on their own - or after a time of good convalescence. The first two areas I’ll talk about - rest, relaxation and sleep; and good food and nutrition - are of course essential for good health for everyone. And if there is the right support and advice early on, and there aren’t any underlying illnesses or problems persisting, then people often find they can recover well, gradually returning towards normal levels of activity and better health, as they are able to, if they don’t try to push themselves too quickly.

If you have the debilitating symptoms of ME for more than about 3 months, without any significant recovery, and all the other possible diagnoses are getting tested for and are ruled out, then it is important to try to sort out anything which may initially have caused or triggered the illness, as well as anything which may still be making it carry on, or stopping you from getting well. And although I do think it’s more important to try to treat the underlying problems that are causing illness, where it’s possible, instead of just reducing the symptoms or covering them up, of course it might also be necessary to deal with specific symptoms, like relieving pain or helping to restore sleep that’s disturbed.

There are also many people who are ill with ME, who are highly motivated and of course desperate to get well, and have tried treatment after treatment, but are still severely ill. And that is definitely not through any fault of their own at all, it’s not because they’re not trying hard enough or that they don’t want to get well. Maybe for some people the initial virus or other triggers were so bad and damaged the neuro-immune system that it’s almost impossible to recover, until a real cure is found for them. Or maybe it is this underlying mechanism behind ME which hasn’t been fully explained yet - and maybe people who have recovered from full ME (rather than from a general long term fatigue or depression fatigue or post viral fatigue) have in fact only recovered say 95%, not the full 100%, and even for them, this unknown cause is still there? Some people find they are left with some kind of ‘scar’ of the ME, perhaps just an awareness that they can’t overdo things too much or that their energy levels will have boundaries they have to learn to live within. ME is often a fluctuating illness too, and people can experience relapses, especially when they have more of the same triggers again. But people are getting well! And teenagers with ME can often make quicker and fuller recoveries than older people, even if they’ve been severely bed bound for a time - although not always. I got ill when I was 22, with pretty complex and fairly severe ME. And so far, I’ve probably about two thirds recovered towards being “completely well”, from being “virtually housebound”.

I think Claire Wade, on her website survivingsevereme.com has got a good point too. She believes that “people can recover from ME, but their body has to be at the right stage and there is nothing you can do or try to make the body get better if it's not ready. There are times when no matter how careful you are, you still get worse, and others when you push yourself, but don't suffer.”

Because there are different triggers, predispositions, symptoms, and possibly even causes, so different people with ME can respond differently to the same treatments. What helps for one person won’t necessarily work for someone else, and may even make some feel worse.

ME is so wide-reaching, affecting every part of the sufferer’s life, - physically, every system and function of the body, mentally and emotionally, not to mention socially (including going out, work or school, and leisure), - therefore I believe it is important to try to treat the condition on all fronts. But that doesn’t mean trying every possible treatment all at the same time! Someone with ME is unlikely to have the energy to cope with too many interventions at once, and you also wouldn’t know which ones were working. Anyway, it really isn’t a race, and it’s certainly not a quest for some “miracle cure” - they don’t exist, and can cost a lot in terms of money, and in false hopes. Sometimes people can suddenly make good recoveries when they find the correct main missing bit of their jigsaw, if they don’t have any other complications. But it’s really about getting the basic foundations of good health. It is worth using a planned approach to implement some of the main suggestions which can help, - and then trying other treatments, or bits of the jigsaw, on top, considering what might be most likely to help you. Give things time to take effect - you'd usually get some sense of whether things are helping or not (or even just helping a little bit) within a couple of months - and continue with anything that is working.

Don’t try to fight against the ME or your symptoms, but work with your body to get stronger, to be able to overcome the things that are making you ill. Firstly, aim to stabilise the condition, stopping the huge ups and downs, and aim to be able to live within the fatigue. Then strengthen the body and immune system to be able to fight infections and so on. Then treat any underlying things which may have initially caused the illness and are still present, or which may be perpetuating the illness or preventing recovery. Take it gently, and be patient, as the balance between the loads on the body’s systems, and their ability to stand up to those loads, is repaired. Recovery may take some time, or can occasionally be quite rapid - it can depend on how long the ME has lasted, and on how complex it is, and on whether you find one particular cause and a specific treatment which remedies it. But don’t put expectations on yourself with targets and deadlines of when you’re going to get well, that doesn’t work. Just take one step at a time, and accept that sometimes it’ll be a case of one or two steps forward, and then one or two steps back, and then hopefully a few more steps forward again. It is quite exciting if you are getting better, looking back at something you knew you couldn’t have done a little while ago but you can now.

At times, you may feel worse, which can really devastate your hopes - from overdoing it, from infections, from things that happen, also some treatments may make you feel worse at first (for example stirring up toxins into the bloodstream before they are eliminated). Or your body may actually be starting to get strong enough to react to part of the illness and have symptoms to try to deal with it. But obviously if a treatment is actually making you generally feel worse, stop it! When you have setbacks, don’t panic, and try not to let it get you down. Learn through them, remember any improvements you have made, keep positive, and remember to continue with any treatments which have been working. Be assured that you don’t have to go back to square one every time you have a setback, and don’t feel that you’ve always got to question why you’re having a bad day or week, or to blame yourself for overdoing it. Take one day at a time.

Firstly, I’d definitely recommend you go to Dr Sarah Myhill’s website, drmyhill.co.uk and download and read her excellent free book, ‘Diagnosing and Treating Chronic Fatigue Syndrome’.

Now, I believe there are ten main areas to look at for approaching treatments for ME. Here are the things which I think have really helped me, or others with ME - remembering that not everyone benefits from the same things. I hope to talk about them all in a lot more detail soon. The first two aspects are the most important for good health for everyone - rest, and food.

1. Rest
- Get enough rest to give your body all the energy it needs to have the best chance of healing.
- It is really important to pace yourself carefully, managing how much physical and mental activity you do, however it works best for you, so that you are not making yourself feel ill from what you do, and so that you avoid the “boom and bust” cycle, - but also so that you don’t end up doing “nothing” either. ‘Graded Exercise Therapy’ (GET) can sometimes be very harmful, if you’re forced to do it inflexibly - making you do increased exercise or activity beyond what you are able to do, can cause severe relapses, so always pace within the limits of what you can currently do.
- It is essential to get enough good sleep at night, and preferably not during the day - using things that could help, such as melatonin, herbal or pharmaceutical sleeping aids, relaxing before you go to bed, and so on.
- Accepting that you’ve got ME at the moment is often an important step, but that doesn’t at all mean being resigned to it or giving up. Do keep having ambitions and hope too, although that can understandably be very difficult for anyone who is severely ill and disabled.
- Having good support, practically, medically and emotionally, can make a big difference, as can dealing with, or reducing any stress in your life. Sometimes it could mean making changes to your lifestyle, hopefully even positive ones. Counselling can help some people, but remember that Cognitive Behavioural Therapy (CBT) is not a treatment for ME itself, if it is trying to suggest to you that your illness or symptoms are not real, when they are.
- Relaxation, breathing exercises and gentle stretching exercises, can all be helpful for the muscles, mobility, freeing tension, eliminating toxins, and improving blood flow.

The other essential foundation to good health is:
2. Good food and nutrition
- Enjoy eating good whole foods, especially vegetables, and plenty of water, and don’t waste your energy and appetite on eating processed foods and refined carbohydrates. Making fresh juices at home from raw organic veg and fruit is said to be a good way to get some of the best nutrition you can.
- Many people with ME benefit from various good quality nutritional supplements. Just very briefly, the main ones which people say can help are: EPA omega 3 fish oils; magnesium; vitamin D(3); vitamin C; and B vitamins, especially B12, B3, B5 and B6; also zinc; selenium; vitamin A; iodine, or kelp, algae or spirulina; raw sea salt; coconut oil; and aloe vera.
- Many people with ME benefit from avoiding all sugar, and doing what they can to have a more stable blood sugar level, and some are helped by cutting down on fructose, the sugar found in fruits, as well.
- Investigate food intolerances - as well as coeliac disease, many people with ME are allergic to gluten, and also dairy. Often people with ME cannot tolerate alcohol well, and it is worth cutting right down on stimulants such as caffeine.
- And make sure your digestive system is working as well as it can and that your stomach acid levels are OK - look into possible candida infections, and consider taking probiotics to improve your gut bacteria, and digestive enzymes to improve your digestion and absorption.

3. Support the mitochondria which make energy in every cell throughout the body. Read Dr Myhill's advice, including about blood tests that are available - but supplements include Co-enzyme Q10, which I’d particularly recommend, and possibly any combination of acetyl L carnitine, vitamin B3 (or possibly NADH), vitamin B12 (possibly as an injection), magnesium (possibly as an injection), and D-ribose.

4. Detox
- Cut down on, and try to avoid processed foods, additives, sweeteners, exposure to pesticides and weedkillers, air fresheners, and various sorts of chemicals in many household cleaning products, toiletries and make-up, which it is known can often disrupt our nervous systems and our hormones.
- Try to avoid catching viruses and other infections, and strengthen the immune system with supplements, echinacea, rest, and keeping warm.
- Cautiously try a sauna, spa therapy, or hot baths (with magnesium sulphate Epsom salts), to help sweat out toxins and detox.
- Take the best advice before having any vaccinations, as they can cause a relapse for people who are recovering from ME.

5. Chiropractic, (cranial) osteopathy, Perrin technique
- These treatments can ease pressure around the neck and the base of the brain, spine and dorsal root ganglia, releasing muscle stiffness, tension or eliminating toxins. Chiropractic treatment personally helped me a great deal, reducing my headaches and dizziness a lot, and letting me start to read and use the computer again.
- Acupuncture, acupressure and reflexology can seem to help some people with pain relief and relaxation, and also claim to be able to correct imbalances between organs and body systems that are not working properly.
- If your symptoms include severe or constant pain, consider contacting a ‘pain clinic’ or trying pain control techniques.
- And coloured glasses or coloured plastic overlays do help some people who get headaches and vision problems when reading or using computer screens.

Then look at:

6. Hormone problems
Under your doctor’s advice, check for thyroid problems (which can sometimes be partly helped with thyroxine), and adrenal fatigue (which can sometimes be partly helped with DHEA or corticosteroids). It has also been said that the pill and HRT can make problems worse for some women with ME.

7. Blood circulation, heart problems, hyperventilation
- Under your doctor’s advice, check for any blood circulation or heart problems, including low blood pressure when standing up - neurally mediated hypotension (NMH) or POTS, which can sometimes be partly treated.
- Hyperventilation can be a problem making ME a lot worse for some people, which can be helped.
- It has also been suggested that beta blockers medication and statins can adversely affect the mitochondria, which could be helped by taking co-enzyme Q10.

8. Emotional factors
In future videos, I’ll be talking more about working through emotional and life difficulties, and how “mindbody” and “psycho-neuro-immunology” approaches consider the possible physical effects of negative emotions that are not being dealt with. There is a lot of information available free online, or in widely available books, about Emotional Freedom Technique (EFT), Reverse Therapy (RT), and other similar approaches.

9. Immune system, antioxidants, and chronic toxicity
Dr Myhill talks about all of this in a lot more detail.
- Improve the body’s antioxidant status, to help the immune system and detoxification. Again, some specific supplements are recommended.
- Try to eliminate any long term toxic loads in the body, including dental fillings, moulds from toxic environments and buildings, Multiple Chemical Sensitivity (MCS), electromagnetic field sensitivity, and so on, and consider whether allergy desensitisation could help.

10. Medicine
- Consider getting tested for Lyme disease, which can often be treated.
- There are a number of pharmaceutical medicines which some people with ME say they have benefitted from, under the advice of their doctors - including LDN (low dose naltrexone); various anti-virals, anti-retrovirals, mycoplasma treatments, and immune system modulators; treatment protocols for the methylation cycle and glutathione system; oxygen therapy; low dose amitriptyline for sleep and pain relief; and others.
- And some herbs are said to be able to help sometimes, including passiflora (passion flower), for encephalitis and an overactive brain, valerian, hops, and skullcap; milk thistle; evening primrose oil; and many others.

I’ll start going through all of these ideas in more detail soon. And hopefully, with knowledge and support, we may look forward again to improving health.