The sun shone through the open French windows as 19 people gathered to hear Stavia give her thoughts on ME (which she refers to as CFS). You could have heard a pin drop as people listed intently to this attractive and engaging woman speak so openly about the conclusions she had reached having treated several people with ME.
(These are only notes. I do not take short hand and have only managed to capture the gist of what Stavia said.)
In her introduction, Linda said that Stavia was known for her interest in Sleep, Circadian Rhythms, ME, Parkinson’s Disease and is also known as a singer.
Dr. Stavia Blunt:
Stavia was a junior doctor at Charing Cross with Russell Lane when she first came across ME. He was looking at the persistent virus theory in the early 1990’s. However, the majority of patients did not show evidence of persistent virus infection. (Dr Blunt said later in her talk that she felt that the idea of a viral trigger may have misled a lot of the research thinking. She now believes the virus hits when the patient is in a weakened state but it is the weakened state that is the trigger not the virus).
To go back to 1990, Dr Lane believed that most got better with anti depressants which may have added weight to the “psychological theory behind ME.” However, Stavia believes that the patient is probably responding to the anti depressants in a biochemical way.
She says ME is terribly under serviced and poorly understood.
She cited the example of one of her patients, a young woman of 22 who had been a high flyer who developed a virus after skiing. She developed an inverted sleep rhythm and severe migraines. Stavia tackled each symptom individually and gave daylight treatment. The patient is now better and at university.
She deplores the tendency to lump all patients presenting with ME together. She sees sub groups e.g. those with adrenaline dysfunction, others with immune response problems and others with pain.
As a neurologist, she sees the involvement of the dopamine system as well as the adrenaline system. Those with problems with dopamine supply have problems with cognition as it is important for speed of thought. It can be tackled through dietary treatment.
She likes to deal with symptoms as naturally as possible.
Food – Stavia sees this as important but doesn’t recommend exclusion diets except for those who appear to be intolerant of certain foods. She advocates a well balanced diet with high doses of Vitamin B.
Glutathione is also helpful. Ginseng is an adaptogen; it is good for some people as it helps the nerve cells adapt to the needs of the individual. She feels we are lagging behind USA and Europe in supplements and recommends BusyB and also Biovea –both internet sites. They are very pure compounds.
She recommends St Johns Wort as good for adrenal function as well as depression and it is also a supplier of dopamine.
She believes that many people with ME do not have a normal stress response. These people need to see an endocrinologist. It is important that people get to see the appropriate specialists but 40% of people with CFS are not being recognised. The response to stress is a major trigger.
You can have your adrenal function tested by your doctor.
Stress eats away at our reserves and destroys the adrenals and other toxin mopping up agents.
This can be repaired by looking at diet and getting plenty of exposure to light. Most people do not get enough exposure to sunlight and day-light. They then expose their brain to light from TVs and computer screens at the wrong time of the day, in the evenings. Do try to reduce stress.
CBT helps if it is right for you but it is not right for everyone.
The neural pathways can be healed.
Dr Blunt is going to write up some of her case studies for general release.
She admits time is a real problem for many GPs.
In response to a question, she said the ideal ME Clinic would include: Nutritionist, Light Therapy, graded exercise and CBT, and a Psychiatrist in case of a secondary psychiatric problem, and links to other specialists. (including I presume a neurologist like herself).
Light is so important. It is full spectrum light that is the best that you get in the middle of the day. Our brains require it for the pineal gland to work and produce melatonin which affects other hormones. If it doesn’t our chemistry is all over the place.
Expose yourselves to full spectrum light during the day!!!!!!!!!!!!!!!
We need some UV rays. They are not only to be feared. There is a global deficiency of Vit D because of overuse of suntan lotions. UV light affects balance of autoimmune cells in both MS and ME.
There is an overlap with ME and Migraine patients. The latter are also often fatigued.
A question about thyroid deficiency – it is at the end of a chain of events, not the trigger. But it can help sometimes to have a replacement. It affects the Hypothalamic and Pituitary glands.
A question about voice loss in ME – vocal chords depend on dopamine to function, as in patients with Parkinson’s Disease who tend to lose vocal power.
A question on what tests should be carried out – Stavia first makes sure that the patient does not have something else and initially does a 24 hour urine collection which tests for dopamine.
Glandular fever is not necessarily a trigger. Most adults get it at some time but do not have ME.
Positive thinking is hugely important because of its benefits to the immune system.
A question on melatonin – this is something to be wary of as far as supplements go. Better to fix your own melatonin supply by getting enough light!
A question on mitochondria – this is of interest and can be dealt with by taking Q10 and other supplements but there is no evidence that they do any good.
She finished by saying that ME was a fascinating condition and it is improvable.
Written for the Richmond and Kingston ME Group by Sue Hoar.
