Graded exercise, according to some sufferers is one of the most patronising and pointless pieces of advice to give, alongside such helpful comments as “aren’t you a bit depressed?” and “it won’t last forever”. Sadly it can last forever and as one patient told me “I’d rather have cancer, at least people would know what to do”.

The bad news if you’ve been suffering for more than five years, it’s rare if you go on to make a full recovery. If you are suffering at the moment, take heart (if that’s at all possible) you are in good company; Florence Nightingale, Randy Newman, Flea from the Red Hot Chili Peppers, Blake Edwards, Cher, Stevie Nicks, Michael Crawford, David Puttman and Sir Andrew Lloyd Webber are all or have been sufferers. What have these people got in common? – well they’re hardly couch potatoes are they? Overwork and burnout would be another common theme.

Branded as Yuppie Flu in the 1980’s, the history of “ME” dates back to the 19th century. Neurasthenia and polymyalgia were described in medical journals pre-dating this time, together with vague symptoms of anxiety, aching muscles, depression and neuralgia.

In 1955 it came to prominence at The Royal Free Hospital where nearly 300 staff were affected by the illness and 255 were admitted to hospital. The first few cases were labelled as glandular fever so as not to spread panic and alarm as it became clear this was something else entirely. There was certainly organ involvement of the central nervous system, lymphadenopathy (enlarged lymph nodes) and fever. Other symptoms included headache, sore throat, malaise, lassitude, vertigo, pain in the limbs, nausea, dizziness, stiff neck, depression, diarrhoea and tinnitus. One of the most prominent symptoms was muscle spasm which seemed to justify the term myalgic. The encephalomyelitis part is to do with inflammation of the brain and spinal cord. More in depth investigations showed little. Cerebrospinal fluid was normal and ESR was not usually raised. Lymphocytes were however found to be raised which could have indicated a virus of unknown source. Most of the sufferers were female due to the amount of women working in the hospital at that time. It all ended in mystery and few concrete answers came out of the investigations.

In the 1960’s and 1970s epidemic cases were called mass hysteria and by and large it was put in the box of psychiatric disorders. It took until 1978  for The Royal Society of Medicine to recognise “ME”as a disease with an organic base. In  the 1990’s researchers found DNA sequences similar to the HTLV-II retrovirus in some fatigue patients. This could potentially be passed not only genetically but from mother to child in breast milk and cause myelopathy. After initial excitement this data was later refuted.

Bringing us up to date, ME/CFS is now a fully recognised medical condition, however there is still little formal protocol as to how to treat patients. This is partly because sufferers need to be treated individually. Failing to understand this basic point and putting all sufferers in the same box is the first mistake. Not taking a thorough medical history and timeline of the patients journey to ill health is the second mistake. Within that, many clues lie as to why the patient became ill in the first place.

Sadly a ten minute appointment at the GP won’t touch the sides which is why CFS patients have to return to their GP over and over as the symptom list can be lengthy. No ones fault, but that’s the reality.

Many patients with Lyme Disease, hypothyroidism, glandular fever or severe Vitamin D deficiency could have the same symptoms as those of ME/CFS. To mistake one for the other can lead to confusion. Whatever we agree or don’t agree on, CFS is usually found in Type A personalities, overworked, overachievers and often after a trigger event. There will usually be a build up of issues with either a virus, travellers diarrhoea, overuse of antibiotics, death, divorce, loss of work, burnout through overwork and then a trigger event. The trigger event can be something fairly small like a cold, and then the patient is finally “taken out” like a wounded animal shot with a tranquiliser dart and down you go, literally and metaphorically.

Fatigue syndromes rarely come out of nowhere, there is always back history. The full symptom list is overwhelming but may include:

• Problems with thinking
• Worsening of problems with standing or sitting
• Tender lymph nodes in the neck or armpits
• Sore throat
• Irritable bowel syndrome
• Night sweats
• Sensitivities to foods, odours, chemicals, or noise
• Fibromyalgia
• Inability to cope with any kind of exercise
• Unremitting fatigue
• Headaches
• Low grade fevers

The trouble with these list of symptoms as you can see is that they could relate to other illnesses. It’s a complicated business.

One of the problems is the amount of time needed to give to one patient and go through symptoms. It is almost impossible for a GP in ten minutes to assess what the patient needs with this amount of complexity. One of the frustrating things is in CFS/ME patients everything needs to be checked. When I say everything I mean… well everything. That is expensive and time consuming but no stone can be left unturned.

Taking time to look at why the patient became ill is very helpful in getting the patient better. Psychological support of one type or another is key as well as nutritional intervention and a vast array of blood tests. When I work with GP’s they are often surprised at the list of bloods I suggest but realise how important it is to start to rule things out. I think it’s important to stay fairly orthodox. Time and time again I’ve seen people being pulled in directions that have not helped them, desperation making them vulnerable.

However it needs to be a multi system approach pulling in the best people that you can find. Patients should get better, the ones that don’t, and I’ve seen people who’ve been ill for 15 years or more, need to ask some hard questions. Are they wasting their money with people who don’t know what they are doing?  You can’t just shove a lot of vitamins at this and expect to get better. Viral studies are far more relevant than live blood analysis for example.  Some tests are helpful and some are quite frankly bonkers. The gut microbiome in my humble opinion is key in understanding what has gone wrong. In all my CFS patients their gut flora has been damaged along the way and not helped with immune system response, production of serotonin, IBS symptoms  etc.

There isn’t enough space to give you any hints or tips on how to recover as everyone is so entirely different in their story; why they got ill in the first place, their personality and recovery speed. Whatever you do choose, start with your GP, and then possibly there will be consultant involvement of some shape or another. Get good support in talking therapy if at all possible. Even if you think you don’t need it trust me after a few years of illness it’s all you can think about so talking therapy is key. The extra burdens of being on benefits and trying to fill out forms is also another hurdle. I know long term sickness benefit is heartbreaking for those overachievers who are living on barely nothing and no extra money to do things that might make a huge difference. As Lady Gaga said in her recent Netflix film Five Foot Two, it’s all right for me with a team of people to help me cope with fibromylgia – what about those that can’t access that kind of help?

Because it’s so complex I offer a two hour consultation and work closely with GP’s/Consultants and I try where I possibly can to  check everything that is in my remit. I will leave no stone unturned and the patient’s story is very important. There is usually a golden nugget of information there which can give clues as to what has happened. That, quite frankly, is not a bad place to start.

If you would like to discuss your particular CFS/ME needs with Kate to see if a consultation might be helpful, please call 01323 737814/310532. For more information on Kate go to www.katearnoldnutrition.co.uk

The post What’s wrong with ME? appeared first on Wellbeing Magazine.

I reflect on the fact that this same month four years ago (June 2012) I was bed bound in terrible pain with no ability to care for myself and with no comprehension as to what was happening to me. It felt like I was under a permanent cloud unable to reach the sun above. I had been diagnosed with severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. I had heard of it but did not have any real understanding of this illness. I was reeling from the experience but also from the information that I was given describing the dire statistics of what I could expect. I also just could not get my head around being referred to as disabled. Yes, I agree, I could not walk. Yes, I agree, I had lost my voice and could not communicate except via text. Yes, I agree, I needed to be brought my food in a thermos. Yes, I agree I could not bathe myself nor care for any of my needs. But, still, I did not see myself as disabled.

I have an intense dislike for this word. I am a very stubborn individual and prefer to see everyone as able or capable with a list of things that they may not feel so able to do. I passionately believe that one’s spirit can overcome just about anything. That day the doctor sat in my bedroom and called me disabled I remember whispering back ‘this is simply your opinion’. I refused to listen any further. He had nothing more to offer me so I decided I would somehow take care of myself. In my mind the words pulsed – I will walk again – I will run again – Most importantly – I will be there for my son.

Despite my conviction initially I cried a lot and I was furious. I was in so much pain. I had Fibromyalgia as well we discovered. I felt exceptionally helpless, something I had never felt physically before. I prayed for hours on end. I was unable to hold a conversation, have a hug from my baby boy or my partner, listen to music, nor watch a film. All I could do was survive from moment to moment. At my worst my heart felt like it would just stop beating and I lay still flat on my back waiting for the feeling to pass.

My saving grace, apart from being immensely stubborn, was my training in psychology and homeopathy. I began to use mental exercises to help me focus and relax. I used meditation to relax my body and use the time to reflect and observe this illness as if from a third party perspective. I observed my symptoms and self medicated using herbal and homeopathic remedies. My partner being a skilled homeopath also helped me by suggesting remedies. I had help from other gifted healers too. It took nine months but I began to turn a corner. I finally could spend a few minutes a day with my son and partner, do a bit of reading, and listen to music again. Heavenly.

I read up on this illness and the more I read the more it felt like going round in circles. One day, something miraculous happened. I was annoyed with my partner for some unknown reason and an old friend made contact just as I was feeling particularly huffy. My friend said ‘oh it will all be fine’ and uncharacteristically for me I also got huffy with her. This led her to recommend me a book to read. I growled and hung up. Then an hour later felt idiotic, could not remember why I was angry with either of them, so I apologised to both, and asked my partner to order in this book. It arrived a few days later and was written by a psychologist describing all different forms of relationships, our responses to various situations and how these are determined by our relationship to our primary caregivers as children.

In it there was brief mention of a neurological study on the Vagus Nerve in relation to how and why when some individuals are challenged they feel very stressed and have a whole host of symptoms, whereby they shut down emotionally and physically. Time suddenly stood still. What was being described here all sounded very familiar. All the symptoms were very similar to those described in CFS/ME though on a very mild scale. I wanted to jump out of bed and run down the hall to tell my partner – THIS IS IT, I think I know what this illness is.

I got a full copy of the study and was able to piece together a satisfying theory of this illness, explaining how it develops and why. From this I worked out how to get myself better. It was stress related, and the mechanism that is at the heart of our ability to heal – the Autonomic Nervous System (fight or flight response/immune system/heart/digestion) – was malfunctioning. In essence, I understood that the part of me that normally controls and fixes everything now needed my support to help fix itself. I was doing all I could physically by eating healthy, taking supplements and my homeopathic remedies. Now I understood that I had to tackle my lifestyle choices and change my behavior. I looked for other ways to also actively relieve the autonomic nervous system. We moved out of the city to the suburbs, and very importantly I learned how to say ‘NO’ and do things more on my terms. My journey of recovery began with the words ‘I need….’ and it took me a good 18 months to get fully back on my feet.

From the moment I made the connections I have wanted to share this information with others, and share that recovery is possible! I took to writing about my experience, and also work as a healer and life coach helping others on their journey of recovery.

If you have any questions visit www.helengermanos.com.

Silent Pain, How Stress and Trauma may lead to Chronic Fatigue Syndrome.
www.troubador.co.uk

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