What is ME?

It has been 50 years since the first clinically documented outbreak of ME here in the UK. That's not to say it wasn't around before then. There are reports of it in medial papers as early at the 1930s and even further back, Florence Nightingale is suspected of suffering from this illness.

Today in the UK, it is not known for certain how many people suffer from ME. Conservative figures put it at 250,000, with 1/4 of these suffering from Severe ME, forcing them to be bed or housebound. The number effected by the illness is likely to be 2-3 times that as each person suffering from it will be in some need of help from family and/or friends.

In basic terms, ME is a very serious, disabling and chronic organic disorder, meaning its roots are physical and not mental as many misconceptions would have you believe.

Symptoms:

Fatigue
Post-exertional malaise and/or fatigue
Sleep dysfunctions
Pain
Neurological / cognitive manifestations (eg confusion, sensory disturbances, ataxia, disorientation, impairment of concentration, muscle weakness etc)
At least 1 sympton from two of the following categories:

1. Autonomic Manifestations (eg extreme pallor, nausea, light-headedness, palpitations)
   
2. Neuroendocrine Manifestations (eg sweating episodes, marked weight change,
3. Immune Manifestations (eg recurrent sore throat, tender lymph nodes, general malaise)
   

The illness persists for at least 6 months.

Sufferers can and do recover, with a better prognosis for younger sufferers. However, recovery is all relative. Most sufferers have to learn to live with varying degress of the symptoms, which will stay with them. Unfortuanately, some stay severely ill.

ME is undoubtedly of biological origin. It is not a case of people being 'lazy' or 'not bothered'. A coordinated strategy for biological research is now needed, supported and funded by the health care system and government, so that the sufferers and their carers get the support, understanding and cure they deserve.

Severe ME & me - my story

Here is the story of one woman's battle against ME in her own words:

"After gaining 9A* and 2A grades at GCSE and 4 A grades at A-level (including the joint highest score in the country for one of them), and having been a member of netball, hockey, football, swimming and athletics teams, I arrived at university in September 2004 to study Medicine, a healthy individual. All that changed when I became ill with a virus in my first term there and then BAM:

This has been my life 24/7 for the last 4 years and 9 months:

Imagine this:
Being bed-bound and unable to sit up because every slight movement, even talking, causes you to go into heart failure; chest pain and pain in the left arm along with your heart straining to pump; severe headaches that mean even a tiny move of your head causes agony to shoot through it; dizziness so great that it causes the room to swim; muscle pain and exhaustion especially in the arms and legs, making it so difficult to move them; insomnia - 2hours broken sleep per night is about the norm; chronic constipation meaning that you have to use a suppository just to get some bowel movement; painful and swollen glands and lymph nodes; a constant low grade fever; poor digestion and absorption that often causes agonising stomach pain; spine pain; muscle twitching...you get the idea!

I don't want your pity. I want you to understand...and to read on to raise your awareness. This is severe Myalgic Encephalomyelitis (M.E.), which means inflammation of the brain and spinal cord [absurdly M.E. is also called Chronic Fatigue Syndrome (CFS)]. I am dictating this in the hope that people will listen. I have to dictate it for obvious reasons.

My life involves just about managing to prop myself up enough to eat, getting to the mini portaloo in my room (a remnant from our camping days), shuffling to the bathroom a couple of times a week to wash lying in the bath under the shower. All these "activities" cause my symptoms to get even more severe and I have to lie still in between them in order to be able to do them. My treats involve watching a bit of television from my bed (though audio and visual stimuli are also exhausting) and going on Twitter on my iPod whilst lying flat. I can manage a few tweet a day, but that takes a lot out of me too.

About M.E.

Dr. Daniel Peterson, a leading M.E. clinician from Sierra Internal Medicine in Nevada, found that “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. The Head of the AIDS and M.E Clinic at Oregon Health Sciences University said that a severe M.E patient “feels effectively the same every day as an AIDS patient feels two weeks before death.” The severity of the illness varies greatly from person to person, with some having to be tube-fed and bed-bound, whereas others are just about able to manage a part-time job. In some cases it can be fatal.

This is a disease that should no longer be controversial. Professor Anthony Komaroff (of Harvard Medical School) confirms "There are over 4,000 papers on the biomedical nature of ME/CFS...spanning over 60years." It beggars belief that some doctors still believe that this is a psychological disorder. But it is not surprising since the psychologists/psychiatrists who have the government’s ear have vested interests in the health insurance industry. The Countess of Mar has slated this corruption recently in The House of Lords: http://www.meassociation.org.uk/content/view/826/161/

Unfortunately this all means that the NHS’s treatment approach is based on the should-be-void psychosomatic model of M.E./CFS. If sufferers want any biomedical treatment, we have to go to a private doctor. Internationally renowned Dr. Jonathan Kerr of St George's University of London and Dr. Sarah Myhill in Wales are at the forefront of M.E. research and treatment in this country. They have discovered that CFS is “heart failure secondary to mitochondrial malfunction” : http://home.att.net/~potsweb/atp.html

Dr Sarah Myhill has published a paper which details 'A Test for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)' which she is now using to diagnose patients. The NHS and NICE however are unlikely to even acknowledge this, such is the ignorance and corruption surrounding this illness. http://www.prohealth.com/me-cfs/library/showArticle.cfm?libid=14274&B2=EM021109C

Not only do we have to cope with a serious illness, we have to cope with disbelief from doctors, friends and family. NHS doctors in their ignorance prescribe GET (Graded Exercise Therapy) which has proved to be harmful for most M.E. patients and has caused many to get irreversibly worse. Professor Malcolm Hooper and Margaret Williams wrote:
“In relation to the potential dangers of exercise for people with ME/CFS, there is evidence that in some ME/CFS patients, their antioxidant defences against free radicals (which can cause damage to the cells of the body) are overwhelmed, resulting in cell injury, a process known as oxidative stress. Exercising muscle results in excessive free radical generation, and research has demonstrated that incremental exercise challenge induces a prolonged oxidative stress in ME/CFS patients, who are known to carry a heavy load of oxidative stress.

There is real concern that not only is CBT (Cognitive Behavioural Therapy, the other "treatment" provided by the NHS) ineffective, but that GET is potentially harmful to patients with ME/CFS. It is known that GET may leave up to 82% of ME/CFS patients who have undertaken it irreversibly house or bed-bound. Given what is known about the disorder, this is hardly surprising.
As was noted by Jim Wilson on Co-Cure on 8th July 2007:

“CBT is not a treatment when used for(ME)CFS because it basically is merely advice to the (ME)CFS patient not to over-exert themselves. That is common sense – not a therapy. Yet (an) industry has sprung up of some health care professionals who get paid for giving (ME)CFS patients this simple advice, claiming it is therapy. And CBT is cynically and falsely claimed to be a therapy for (ME)CFS by certain government and business interests who use that false claim to imply that (ME)CFS is due to some psychological problem of the patient, and not to a biological illness. Those who claim CBT has cured (ME)CFS have never proved that claim”.
There has been much unrest at the grant of £2.6 million by the Medical Research Council (MRC) to Wessely School psychiatrists to carry out more “research” into CBT and GET for people with “CFS/ME” (the PACE trials)…The Wessely School teaches that “CFS/ME” patients must disregard their symptoms and continue exercising even if they are absolutely exhausted.”

I need everyone to get the word out, so that these gross injustices will stop, so that more biomedical research will be carried out and so that the psychologists will finally be silenced. My well-being and recovery depend on this story being told over and over again, until the government, health insurance industry and the NHS get the message.


See www.investinme.org for more info on M.E. and the International M.E./CFS Conference"

The reason for this blog

Fortunately I don't suffer from Myalgic Encephalomyelitis (ME), but for those who do, it can be so restricting. I'm setting up this blog as a place they can tell their stories and share information with other suffers, educating others as they go.

This is a work in progress, so please bare with me.