My Journey Through M.E.
This is my story of my journey with M.E., also known as Chronic Fatigue Syndrome, which has occurred twice in my lifetime.
The type of “fatigue” that I suffered from is primarily mental exhaustion and secondarily physical/muscle fatigue.
My first experience of fatigue was in my 20s and was entirely caused by stress. I had just lost a long employment in telecommunications; this plus several other contributing factors meant it could have been a relatively minor experience. However, in the 1970s the standard treatment was anti-depressants. Unfortunately, the one I was prescribed was a dopamine antagonist, i.e. a dopamine “blocker”. I now know that the neurotransmitter dopamine is massively involved with mental energy and also motor functions. So what may have been a short period of fatigue was turned into acute M.E. I even became bedbound for a while. The rut I was in was a nightmare to get out of, but I eventually managed to gradually withdraw the medication, and my energy slowly returned.
Why drugs that are specifically designed to cause mental and physical fatigue were (and still sometimes are) used to treat M.E. beggars belief.
It took years to rebuild my life. I had previously had a telecoms career, but I had a complete change of direction to a property landlord. I married, had a daughter and was in relatively good health for 20 years. I qualified as a hypnotherapist, authored a book and did much research into Complementary and Alternative Medicine (CAM), especially for cancer and Alzheimer’s/dementia, concentrating on evidence-based and proven information.
Then, for no apparent reason, the second episode of M.E. gradually began.
M.E. is usually an insidious disease. It was in this case, and it gradually got worse until I sought help and visited my GP – an appointment that I will never forget. After a few minutes it was obvious that he believed all M.E. is psychological, an opinion that unbelievably is STILL held by about 10% of doctors. He walked to the surgery door, opened it for me to leave and said, “I have patients with real illnesses to see”!
My deterioration continued until I became almost housebound, barely able to talk, walk or eat easily. The only relief was to lie in a darkened room. I had a home visit from a different GP, who prescribed an SSRI anti-depressant since he believed M.E. is caused by depression. It was of no benefit whatsoever, actually making me worse. I have since read research that “SSRIs, some other anti-depressants and most anti-psychotic drugs, can cause M.E. because they are directly or indirectly dopamine antagonists”! This can be quickly or long term depending upon the type of drug.
If depression causes M.E., then according to NICE guidelines it is not M.E. but fatigue caused by depression, which is a totally different illness. Apparently there is a simple “test” which may reveal the difference. I have mentioned it near the end.
Out of desperation a private doctor was paid to do a home visit (rather expensive). She also suggested an SSRI since she believed that depression usually is the cause of M.E. I did not want to try another SSRI. (I recently saw a TV documentary which revealed that a common SSRI never worked better than a placebo for depression, in clinical trials, and this has always been known, but ignored!) The private doctor then suggested an MAOI (type A). MonoAmine Oxidase Inhibitors work by helping Dopamine synthesis. Dopamine is largely responsible for mental energy and also some motor function, so this sounded more promising. However, I was aware that MAOI(A)s have strict drug interactions and strict diet restrictions.
I then paid for a private nutritionist, who specialised in M.E., to do a home visit. She mentioned that an MAOI (type B) can be just as effective with very few drug interactions and no diet restrictions. (I have often enquired why MAOI(A)s are ever prescribed but never had a satisfactory answer.)
I started taking the MAOI(B) Selegiline, which has an excellent safety record. Selegiline is normally used to treat Parkinson’s Disease, but for many years CAM practitioners have been recommending it for some types of M.E. and cognitive decline. It has also become popular with “life-extensionists” who are already in good health, since age-related increase in MonoAmine Oxidase may contribute to CNS neurodegenerative diseases.
The nutritionist arranged an extensive set of blood, urine and stool tests. They confirmed a major Noradrenaline (NA) pathway disorder. Dopamine metabolism plays a large part in this.
Five main findings were:
- Very low Vanillylmandelic acid (VMA). The end “result” of the NA pathway is urine VMA, so it is an excellent marker for this problem.
- Zero acidophilus and very low levels of other probiotics in my digestive tract. Acidophilus is essential for dopamine metabolism in the intestine. My overall digestion was also very poor, resulting in very little food being digested properly, therefore causing general fatigue.
- Uridine deficiency. Uridine can play an important part in NA metabolism.
- Vitamin B6 toxicity. The multivitamin that I had been taking for three years contained an extremely large amount of vitamin B6, enough to cause nerve damage and fatigue. A definite improvement was noticed soon after cessation. I now only take normal RDA of vitamin B6.
- My vegetarian diet was also unhelpful for my particular situation since my digestion was already so poor that my protein absorption was very small. When I changed to a high protein diet I soon noticed a large improvement in general energy. I now eat unprocessed meat and fish and avoid overcooking. I stopped my sugar intake (gradually), ate raw green vegetables whenever possible and took digestive enzymes.
I was also a very keen de-caf green tea drinker. All tea, but especially green tea, is a slight decarboxylase inhibitor, which in turn inhibits dopamine. This is normally unnoticeable since the caffeine outweighs the effect, but in someone suffering serious mental fatigue, de-caf green tea is unhelpful. Green tea is also a telomerase inhibitor. This is good if one has cancer, but unhelpful for M.E. sufferers, since general cellular replication is inhibited.
There were many more indicators of NA/dopamine metabolism disorder. None of them had been found by conventional tests. I changed my diet and also took natural MAOI(B)s, of which there are dozens, and include blue/green algae (spirulina & chlorella), rhodiola, nutmeg, turmeric, watercress, black pepper, licorice root, “Herbs de province” – Oregano, thyme, lavender, basil, sage and rosemary. Also, passionflower and kava-kava (night time only, since they are sedative).
Eventually I became well enough to go out more often, but I was far from 100%. After some reluctance from GPs I was referred for several outpatient appointments. Some basic blood and urine tests were repeated and revealed nothing abnormal. One consultant remarked that some patients had tried DHEA on their own, with positive results, but he couldn’t prescribe it. DHEA is a “master” hormone that declines with age. (Supplementation is not advised with hormone-related cancers.) I tried DHEA but it had only minimal effect. Different consultants did their best and showed concern until two different doctors said “there is nothing further can be done” and “you will never find the cause of your fatigue, mental or physical, so don’t waste your time trying”! This was a bit like a red flag to a bull for me since I had always been determined to find the remaining cause(s).
Shortly afterwards a major cause was revealed in the guise of cancer! This is a separate long story so all I will say is that it was successfully treated and I am now classed as cured.
I have always had a deep interest in Complementary and Alternative Medicine (CAM) since it treats the symptoms and cause of illnesses, whereas conventional medicine almost entirely treats the symptoms. I think it appropriate to expand on this subject for a while:
One of the main reasons for conventional medicine’s symptomatic approach is because the pharmaceutical companies only make money from this area, and they are the driving force of conventional medicine. The funding for preventative medicine has always been minute, but the realisation that this situation is becoming financially unsustainable is finally causing more interest in treating the cause of illnesses. A leading researcher recently remarked that if a fraction of the budget for conventional medicine was spent on prevention, huge health and financial benefits would result!
Complementary approaches certainly helped in my case.
Up to now, 21 causes of my fatigue (mainly NA pathway, and cardiac) have been identified and treated. My family history research has now revealed dopamine metabolism disorders, which led to Parkinson’s disease in some family members. This partly explains my fatigue. I provided a compilation of findings to the doctors who had the most negative attitude, but no interest was showed. I explained that CAM had led to a big improvement but I was told to stop taking all the products! Even though a private doctor was involved with the programme, it seemed that it wasn’t any good because conventional tests hadn’t revealed any causes (whereas CAM had). Statistically, CAM has a much higher success rate in treating most types of M.E. than conventional methods.
I asked if there were any M.E. support groups in the area and was told by several consultants that there are none in Tyne &Wear! Of course I now know that there are several organisations and that they are known by the medical profession. No mention of the national organisations was offered either! All because of the rivalry between conventional and CAM, which still exists. Denying such knowledge of support outside the NHS is wrong and prevents much needed help. Conventional doctors generally did all they could within their remit, and I am very grateful for that, but when other practitioners prove successful, they should welcome this, not try to spoil it!
One day however, a light appeared at the end of the tunnel, in the shape of Professor Julia Newton. By chance I read a newspaper article about her work at the CRESTA fatigue clinic and managed to get a referral. Prof. Newton’s approach was very different and open-minded. She was more concerned with the muscle fatigue side of my illness, which had started when I was a child. It has never been a major problem until recently. Every conventional and private muscle test had revealed nothing. However, Prof. Newton diagnosed two different tachycardia problems. One of them (POTS) has been addressed and a considerable improvement in my breathlessness has been made, which in turn has helped my mental fatigue. The other problem is still being investigated.
The causes of my mental and physical fatigue are quite different, but affect each other considerably.
When I became well enough to go online, I did extensive research into complementary approaches to M.E. I tried many different supplements and some diet changes and eventually found what worked and what didn’t. I admittedly take a large amount of carefully selected products.
I already had a cancer advice website up and running, so I added a section about complementary approaches to M.E./CFS and also longevity strategies. I realise that what has helped me will not be valid for everyone, but I have included more general advice on my website www.complementaryapproachestohealth.co.uk.
The “test” I mentioned previously that may distinguish M.E. and fatigue caused by depression, is as follows:
- M.E. – “overactivity” always makes the condition worse. Rest always makes it better. One cannot “push through”. It is often a NA pathway disorder, therefore anti-depressants other than MAOIs usually make the fatigue worse.
- Fatigue caused by depression/anxiety. Activity often makes this condition better. Sometimes one can “push through” the fatigue. It can be a serotonin metabolism disorder, which may be helped by certain anti-depressants, or if it is reactive depression can be helped by hypnotherapy, counselling etc.
These two types can of course influence each other.
Experiencing such severe fatigue has made me keen to help those similarly affected. 10%–25% of M.E. sufferers are housebound or bedbound, yet receive much less help than those who are well enough to access support groups and other services.
So from lying in a darkened room to my present condition is a huge improvement. Only stubborn determination to find the causes eventually proved successful. I would consider myself 2/3 recovered. The cause of the remaining 1/3 remains elusive.
Feel free to contact me anytime if you think there’s any way I can be of help.