ME Could Be Diagnosed And Treated Faster Thanks To Technique That Helped Girl Too Exhausted To Speak | HuffPost Life

'My body was aching all over.'

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Life Editor at HuffPost UK

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Olivia McDonald missed two years of school when she first began experiencing symptoms of Myalgic Encephalopathy (ME) at the age of 12.

The condition, also known as Chronic Fatigue Syndrome (CFS), left her too exhausted to lift a spoon to eat breakfast, walk to the bathroom for a shower or chat with friends.

Olivia was forced to wait months and see multiple doctors before she could receive a diagnosis and access the treatment she needed, but support could be about to improve for ME sufferers.

There is currently no universally accepted method of diagnosing ME, with diagnosis being completed via the process of elimination of other conditions, making progress slow.

But now, new research suggests a quick technique can provide an accurate diagnosis of ME by simply assessing patients for five physical symptoms.

Olivia McDonald

Olivia McDonald (right).

It is estimated that around 250,000 people suffer from ME in Britain. The condition is characterised by severe, disabling fatigue and a combination of other symptoms including muscular pain, concentration problems and intolerance to exercise.

Olivia, from Lancashire, got ill with ME in September 2004 when she was 12 and was bed-bound for the first year of her illness.

“I had just started year eight at school. The second day into term, I felt too tired to play in the school football team and then the following week I didn’t have the strength to walk to assembly,” Olivia, now 25, said.

“Those few days at school seemed to be the straw that broke the camel’s back. That was the last day of school until Year 10. I felt overcome with exhaustion and having been used to having lots of energy, my body was aching all over.”

Alongside her mum, Olivia went to see her doctor and a private consultant to try to establish the cause of her symptoms. Like many ME sufferers, she underwent a series of blood tests to detect any other possible conditions, which left her with no results.

It was only after she visited Dr Raymond Perrin, an expert in the field recommended by her mum’s friend, that she received a diagnosis and began to receive treatment that appeared to ease her symptoms.

It is Dr Perrin’s method of diagnosis, called The Perrin Technique, that has now been analysed with positive results in the British Medical Journal (BMJ).

Olivia McDonald

Olivia as a child.

In the first study of its kind, involving 94 participants, health professionals using The Perrin Technique successfully diagnosed 86% of individuals with ME.

The study, conducted with support from three NHS Trusts, involved 52 patients who’ve been previously been diagnosed with ME and 42 participants who do not have ME.

Participants were assessed for five physical symptoms with no prior discussion about the patient’s condition or experiences.

When assessed by an experienced doctor using the standard clinical neurological and rheumatological examination, only 44% of sufferers were correctly diagnosed with the condition.

The Perrin Technique is a system of manual diagnosis around five physical symptoms: postural defects, tender points around the spine, chest and lymph nodes, skin rashes or eruptions and abnormal breast tenderness and varicosities (when veins become abnormally thick).

The technique is based on the theory that ME is a disorder of the lymphatic drainage system and can be caused by different factors such as allergies, stress and infections, which can lead to a build-up of toxins in the fluid around the brain and spinal cord.

Once diagnosed, subsequent treatment using The Perrin Technique is focussed on stimulating the fluid motion around the brain and spinal cord through osteopathic movements and massage to aid drainage of these toxins.

According to the BMJ study, this has been found to significantly help sufferers.

“Techniques to stimulate the drainage of toxins in the lymph nodes have been shown to lead to symptom improvement in patients with ME,” the research says.

This is particularly remarkable as a report from the ME Association previously found large variations in prognosis of patients.

“Overall, there is wide variation in the duration of illness, with some people recovering in less than two years, while others remain ill after several decades,” it said.

Olivia said once she began to receive home treatment one a week with Dr Perrin, slowly her symptoms began to improve.

“A milestone change was going from not having enough energy to even speak, to being able to engage in conversation with people and chat to them normally,” she said.

In September 2006, two years after the first onset of symptoms, Olivia was able to go back to school part time, whilst keeping physical activity to an absolute minimum to keep symptoms at bay.

By January 2007 she was back full time and in 2008 she enrolled in a school trip - an expedition to Kenya.

“The expedition was amazing. I even climbed Mount Kenya which gave me a huge sense of relief and achievement,” she said.

“I didn’t feel any symptoms afterwards - the next day I was just like everyone else and I didn’t need to rest. I proved to myself that I could do it.”

Bev McDonald, trustee at charity F.O.R.M.E, which raises funds for research into treatment of ME, said the latest study could help more people like Olivia.

“These findings are really promising,” she said in a statement.

“CFS /ME sufferers often have to endure months of unexplained symptoms before being a given a diagnosis, and this technique has the potential to speed up the process and thus facilitate quicker diagnosis and treatment.

“We hope the research helps to raise awareness amongst both patients and
medical professionals.”

Professor Jim Richards, lead for the Allied Health Research unit at University of Central Lancashire, which ran the study, added: “It appears that using physical symptoms to diagnose CFS / ME has the potential to speed up the diagnostic process and improve the accuracy of identifying the condition.

“Although we would recommend carrying out further research amongst the larger population for validation, this certainly shows exciting potential for sufferers of CFS / ME and the way the condition may be identified.”

21 Rare Diseases

Stiff Person Syndrome(01 of20)

People who suffer from this acquired neurological disorder experience repeated, often painful, muscle spasms as well as muscular rigidity and stiffness. According to the National Organization of Rare Diseases, spasms can occur at random or they can be caused by something as seemingly benign as light physical contact or an unexpected noise. The cause of Stiff Person Syndrome isn't yet known, but symptoms can be stabilized with medication. Left untreated, however, a person can lose the ability to walk.

Gigantism(02 of20)

This disease, which according to the NIH is most often caused by a begnin tumor in the pituitary gland, results in an excess of GH, or growth hormone. This causes sufferers to grow abnormally large, not just in terms of height, weight but also organ size. It results in complications like delayed puberty, increased sweating, and secretion of breast milk.

Pica(03 of20)

Characterized as an eating disorder, Pica causes people to eat what the National Organization for Rare Disorders describes as "non-nutritive" things. That umbrella term can include (but isn't limited to) dirt, clay, paper, and paint. Interestingly, it's not unusual for young kids to experience transient pica as a kind of phase, and pregnant women are also known to develop temporary pica cravings. The cause? Unknown. But in order to be diagnosed with full-blown Pica, a person's symptoms must last for more than a month.

Maple Syrup Urine Disease(04 of20)

MSUD, which is passed down through families, is a life-threatening metabolic disorder passed down through families that stems from the body's inability to process certain amino acids, leading to a build-up of them in the body. According to the NIH, symptoms usually surface in early infancy and can include vomiting, lack of energy, seizures, and developmental delays. MSUD takes its name from another symptom -- the urine in affected infants smells like caramel or maple syrup.

Situs Inversus(05 of20)

Situs Inversus is a congential condition in which internal organs of stomach and chest lie in mirror image of their normal body position -- something many sufferers aren't aware of until they seek medical help for an unrelated problem. People with Situs Inversus typically wear some form of identification to help doctors in the case of a medical emergency.

Trigger Thumb(06 of20)

Trigger thumb, or trigger finger as it's sometimes known, causes a person's finger or thumb to get caught in a locked position. According to the Mayo Clinic, it can then stay stuck or straighten with a painful "snap." The cause? It depends. Trigger Thumb is the result of a narrowing of the sheath around the tendon in the problem figure, but that can be caused by a lot of things, including any activity that requires people to grip things frequently. Trigger Thumb is also more frequent in women.

Scurvy(07 of20)

Once the disease of sailors and pirates, scurvy does still exist in the United States, though predominantly in older, malnourished adults. It usually stems from a Vitamin C deficiency, which can result in gum disease, skin leisons, and swelling of the joints. (credit:Getty )

Wilson's Disease(08 of20)

This progressive genetic disorder causes sufferers to store excess copper in tissues, including the brain and liver. Though the Mayo Clinic says that the body depends on copper in order to use iron and sugar, too much of it in the body can have real consequences. Which is why sufferers of Wilson's Disease are prone to liver failure.

Foreign Accent Syndrome(09 of20)

According to researchers at the University of Texas at Dallas, this speech disorder causes people to experience a sudden shift in their accents and though it is known to be caused by things like brain trauma, conversion disorder, or multiple sclerosis, an exact reason behind the syndrome is unknown. Sufferers of FAS dramatically shift their speech in terms of timing and intonation, which often causes them to sound foreign, but they remain totally comprehensible. Documented accent shifts include from American English to British and from British to French.

Carcinoid Syndrome(10 of20)

According to the National Organization of Rare Diseases, about 10 percent of people with carcinoid tumors -- which the Mayo Clinic says are slow growing tumors that produce excess serotonin and usually appear in the gastrointestinal tract or lungs -- get this syndrome. It occurs only in patients whose tumors have metastasized to the liver. The symptoms? Wheezing, hotness, and extreme facial blushing.

Cyclic Vomiting Syndrome(11 of20)

Children and adults afflicted with CVS experience recurrent episodes of severe vomiting, which can last for days, followed by sudden periods of no vomiting. While kids are likely to experience more frequent attacks, adults's often last longer. To date, the cause of CVS is unknown.

Peeling Skin Syndrome(12 of20)

This obscure, genetic skin disorder does exactly what its name implies: causes sufferers to experience constant shedding of their skin. (In some patients, peeling is limited to the feet and hands.) Along with that, sufferers often feel itching and redness -- symptoms that can appear from birth or develop later in life. Although the exact cause is unknown, a mutation in the TGM5 gene has been identified in many sufferers.

Platelet Storage Pool Deficiency(13 of20)

This is a blanket designation for several rare platelet abnormalities, most of which lead to mild or moderate bleeding disorders. According to the NIH, the problem stems having limited granules -- the parts of platelets that, among other things, store ADP -- the energy released when a molecular bond is broken. That reduction in storage space inhibits the platelets' ability to secrete ADP in a speedy fashion, which is thought to be what causes the bleeding. Classic symptoms of a Platelet Storage Pool Deficiency are nosebleeds, excessive bruising, and profuse bleeding in surgery.·

ACDC(14 of20)

Only nine people in the United States are known to have this disease, which was just given a name in a recent study in the New England Journal of Medicine. ACDC, or arterial calcification due to CD73 deficiency, results in calcium build-ups in the arteries below the waist of sufferers and in the joints of their hands and feet. According to the NIH, the breakthrough discovery found that the disease is related to a variant in the NT5E gene.3

Conversion Disorder(15 of20)

This condition, which typically occurs after an extremely stressful emotional event, causes a person to experience sudden blindness or paralysis that can't be otherwise explained. People with mental illlnesses are at particularly high risk and psychological treatment can help lessen the symptoms.·

Ochronosis(16 of20)

Ochronosis results in black or blue external tissues, often the ear cartilage or eye, though it can occur throughout the body. It affects people who suffer from certain metabolic disorders, but it can also be caused by exposure, though scientists aren't exactly sure to what. Not just a cosmetic issue, the affected areas can become brittle and degenerate over time.

VLCAD Deficiency(17 of20)

This condition, which is caused by genetic mutations in the so-called ACADVL gene, keeps people from converting certain fats to energy. According to the NIH, the deficiency often presents during infancy in symptoms including low blood sugar, weakness, and lethargy.

Hairy Tongue(18 of20)

As the name suggests, Hairy Tongue is a condition in which the tongue develops a black, hairy texture. According to the Mayo Clinic, the disease is "harmless" and is caused by an overgrowth of bacteria in the mouth, which can be treated with antibiotics. The NIH reports that hairy Tongue can also present as brown, yellow, or green discoloration. ·

Ochoa (Urofacial) Syndrome, or, Peculiar Facial Expression(19 of20)

This obscure, inherited disorder presents at birth and causes infants to grimace when, in fact, they are attempting to smile. The disorder also includes an extreme urinary abnormality: an obstruction that interrupts the connection between nerve signals in the spinal cord and bladder, leading to incontinence. Though treatment does exist in the form of antibiotics and bladder re-education, some patients can develop renal failure in their teens and 20's, which can be life-threatening.

Progeria(20 of20)

According to the Mayo Clinic, only around 130 cases of this devastating genetic disorder have been documented since it was discovered in 1886. Affected babies normally appear normal at birth, but within 12 months begin to have symptoms like hair loss and wrinkles. According to the Mayo Clinic, progeria is caused by a genetic mutation, but not one that's passed down through families; it's a chance event that affects only one egg or sperm. The average life expectancy for sufferers is 13.

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