Myalgic Encephalomyelitis is an illness that is often ridiculed and can leave people feeling alone. Check out our anonymous personal account for help and advice on dealing with this.
Myalgic Encephalomyelitis (ME) : An anonymous personal account and some useful links and information with commentary
As an ME sufferer, I appreciate the opportunity to share my journey of discovery and insights as to the nature of an illness that has been trivialised and ridiculed even by medical professionals. This illness has killed people, destroyed lives and is hard to comprehend unless you know someone who is either a sufferer or a primary carer.
I have suffered from ME since the age of 14. In many ways, I have been fortunate. The changing severity of my ME has allowed for me to live a reasonably normal, if somewhat up and down, life. I am now 64 years of age and have only had a diagnosis for 8 years, though I knew something wasn’t right all along. It saddens me to say that I have many friends with ME who have been bed-bound or too ill to leave the house for a decade or more. Diagnosis is a process of elimination. I had tests for sleep apnoea, narcolepsy and had three sleep study tests, all of which found nothing untoward. It was assumed that my excessive fatigue was down to psychological issues and physical de-conditioning, and I was prescribed GET and CBT as cures.
GET required me to force myself beyond my physical comfort zone. CBT was aimed at removing what was believed to be false illness belief. I was also required to go through a process of sleep hygiene, which my young children loved. They were given permission to poke me to keep me awake until my designated bedtime.
The upshot of all this was that I had a major ME crash that left me totally bed bound for a year. My cognitive functioning was very limited – reading and crossword puzzles, a former passion, were impossible to concentrate on. Words seemed jumbled, and I couldn’t recall what I’d read. My memory was absolutely shot, I would sleep 18 hours a day or not sleep at all, speaking was an effort, and stringing together a coherent sentence was nigh on impossible.
It was during this time that I discovered the ME community on Facebook (how on earth did sufferers manage before) and made a network of friends who helped me understand more about ME. This led me on to getting a Mitochondrial Function test from a private doctor specialising in ME. The results showed that my cells did not convert energy effectively, which finally proved that all that I was experiencing was not in my head – I had scientific evidence that my illness was real and had a physiological cause. That was a turning point in my own understanding and acceptance – I could no longer blame myself and my thinking. It removed some of my sense of guilt. Unfortunately, the NHS does not recognise the validity of the mitochondria test, but I was once again fortunate. My previous GP, who may as well have had leeches on the shelves in his consulting room, did not have a clue, so I changed surgery and was lucky enough to find that the new GP was open to admitting he recognised my condition as ME but could not provide a cure. It was at this point that he diagnosed me with ME officially on my medical record after me showing him my mitochondria results.
The last 8 years of my personal account have seen a slow pull back to a point where I am now on the mild part of the ME scale according to the Canadian Consensus Criteria. Much of my cognitive functioning has returned and my physical stamina has increased significantly. I still have to rest, and I still experience PEM if I go outside my normal routine, but I am able to engage in life as long as I am prepared to pay the price.
I shall never be cured of my ME until the science catches up, and I am aware that I could trigger another major relapse if I do too much, so I find I live for today as best I can.
Obviously my experience as I describe it in my personal account above doesn’t mention the severe stresses of trying to keep a roof over my families heads when I couldn’t earn. The almost unbearable pressures of trying to claim disability benefits as Disabled living allowance became Personal Independence Payment and Universal Credit. Having to fill in forms designed to make it difficult when I couldn’t think straight, attending interviews and a tribunal when I couldn’t physically manage to get to the appointments. There was a particular instance where I felt my family would be better off without me and attempted the ultimate escape which, thankfully, was unsuccessful. I was angry, frustrated, confused, frightened, misunderstood, treated as a “malingerer”, prone to temper tantrums that hurt me and those around me.
It was at this point in my personal account that I sought counselling through a local charitable service. The waiting list was 8 months! However, it was a life saver, quite literally. My psychotherapist, familiar with ME, guided me through to a point where I was no longer worrying or anxious about the circumstances beyond my control. She helped remove my sense of guilt and to grow in self esteem. I no longer waste precious energy on self defeating thinking, the upshot of which is that my overall energy has increased significantly.
I attribute much of my major crash to the prescribing of GET. This pushed my already failing body to a point where it failed altogether. Had I been allowed to rest before that critical point had been reached, and if support systems had been available through health and social care, it’s reasonable to assume that my recovery to this point would have been much quicker. I use the phrase remission as I know how fragile my level of recovery is.
This is why the latest NICE guideline is so welcome. GET has been removed as a cure. It has finally been recognised how damaging it is. From my experience, it’s sadistic. CBT is no longer heralded as a cure, either. It is now prescribed as a management tool to help deal with the life pressures that ME creates. The Lightening Process has also been scrapped. You can’t think your way out of a physiological illness. There have been many charlatans offering ‘Cures’ over the years, preying on neglected, desperate, vulnerable people. We still have a long way to go. ME sufferers need real funding for proper appropriate research and the hope is that Long Covid, which carries many of the same symptoms, will give new insights into how to cure ME.
ME
Myalgic Encephalomyelitis
Simply means affecting the body AND the mind, ie an illness that affects many normal body functions.
CFS
Chronic Fatigue Syndrome
It is important to separate the term Chronic Fatigue Syndrome out, as ME/CFS is often used, incorrectly, to describe ME. There are many illnesses that present as Chronic Fatigue, but they lack the PEM component specific to ME. The use of the CFS component has been used by an establishment with vested interests in seeing ME as a psychological illness to confuse and confound the search for real answers.
PEM
Post Exertional Malaise
The primary specific indicator for ME
People with ME often describe this experience as a “crash,” “relapse,” or “collapse.” After activity ME symptoms will become worse, including difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, and especially severe tiredness.
WHO
The World Health Organisation
Classifies ME as a neurological disease.
An estimated 25% of those suffering from ME are housebound or bedbound.
NICE 2021 GUIDELINE FOR ME
National Institute For Health and Clinical Excellence
This guideline covers diagnosing and managing myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) in children, young people and adults. It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier. It includes recommendations on diagnosis, assessment and care planning, safeguarding, access to care and managing ME/CFS and its symptoms. As an ME sufferer, it would be wise to bring the new guideline to the attention of your health care provider, as it takes a while for the information to cascade down to the front line.
https://www.nice.org.uk/news/article/nice-me-cfs-guideline-outlines-steps-for-better-diagnosis-and-management
CCC
Canadian Consensus Criteria for ME/CFS
https://me-pedia.org/wiki/Canadian_Consensus_Criteria
https://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf
Appendix 1 provides a diagnosis check sheet and severity classification.
GET
Graded Exercise Therapy
FOR HISTORICAL INFORMATION ONLY AND SHOULD NOT BE FOLLOWED
(See NICE 2021, which has now abandoned GET as being harmful)
The prescribing of exercise targets to overcome fatigue caused by ‘Deconditioning’, working on the false assumption that sufferers were ill because they were unfit.
CBT
Cognitive Behavioural Therapy
The PACE Trials, now seen as obsolete, engineered the results of their research to show that CBT could modify False Illness Belief, on the manufactured assumption that ME was as a result of avoidance behaviours. CBT is still offered in the NICE 2021 guideline, but it is used to help the ME sufferer deal with the stresses and grief that inevitably come with loss of career, income, social activities and so on.
PACE
Pacing, graded Activity, and Cognitive behaviour therapy
FOR HISTORICAL INFORMATION ONLY AND SHOULD NOT BE FOLLOWED
(See NICE 2021, which has now abandoned GET as being harmful)
The PACE trial was designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence.
MYTOCHONDRIAL DYSFUNCTION
In nearly every cell in the body, mitochondria are responsible for producing energy (called ATP). They are like power stations, supplying the energy our cells need to function.
Cells make up tissues and organs in our bodies, for example the heart and liver. If our cells do not have enough energy, the tissues or organs do not work properly. In much the same way, if power stations do not produce enough energy there will be areas of blackout, where parts of the country cannot function.
In the average adult human, the brain represents about 2% of body weight. Despite its relatively small size, the brain accounts for about 20% of the oxygen and, hence, calories consumed by the body.
It is easy to see from this explanation how both mind and body are impacted by this depletion in mitochondrial energy transfer and why its an area of research that ME charities are keen to see funded.
ME Charities
Invest In ME Research https://www.investinme.org/index.shtml
ME Association https://meassociation.org.uk/
ME Research https://www.meresearch.org.uk/
Action For ME https://www.actionforme.org.uk/
LOCAL SUPPORT GROUPS
https://meassociation.org.uk/information-and-support-line/localsupportgroups/