The ME/CFS Society of NSW Inc.

By Elizabeth Ho

To celebrate the Society’s 25th Anniversary, a seminar with Dr Richard Schloeffel, a GP who specialises in treating CFS, was held. Dr Schloeffel addressed a capacity crowd of 90 attendees. He spoke for approximately four hours and answered individual questions for another couple of hours following that.

In his address, Dr Schloeffel said he has been working with CFS since 1981. Today his practice has over 2500 people his books are full. He said his intention is to get information out into the wider community so practitioners can be trained up in the diagnosis and treatment and management of CFS.

He said that until the diagnosis is established, doctors won't know what they are treating. Unfortunately there are so few of us managing chronic fatigue syndrome. There are a few doctors diagnosing it and quite a few doctors attempting to treat it but they are not managing it. They are giving it a very simplistic view and I think this is one of the most complex disorders I have ever treated in my life.

Predisposing Factors

Predisposing factors for CFS include: viruses including the childhood diseases especially measles, recurrent viral URTI, Barmah Forest virus and gastroenteritis; bacterial infections including severe tonsillitis, urinary tract infections, post surgical infections, pneumonia and bronchitis; bowel parasites; post-partum, post major stress, emotional or psychiatric illness; chemical exposures; post vaccination including rubella in adolescent girls and hepatitis B vaccine and the long-term use of antibiotics especially for acne and chronic tonsillitis.

Clinical Examination

While suffers are accustomed to being told by doctors that nothing can be found wrong with them, Dr Schloeffel listed a number of signs visible on clinical examination including: being in a fugue-like state indicating "brain fog" sinus tachycardia, hypotension and postural hypotension.

heavily coated tongue, glossitis and oral candidiasis; cervical, axillary and inguinal tender lymphadenopathy; cold hands and feet; neurological signs especially unilateral dilated pupils and eyelid ptosis; abdominal tenderness, distension and increased bowel sounds; gross weight loss or obesity; muscle tenderness, trigger point tenderness.

Incidence and Severity

CFS affects young children, adolescents and young adults predominantly and may represent up to 2.5% of patients in primary medical care. It occurs in individuals from all socio-economic groups. It occurs sporadically or in clusters and whole families may be affected giving credence to possible infective or chemical exposure causes. There have been deaths due to CFS reported in Australia and overseas, predominantly from metabolic and cardiac causes and suicides.

Clinical Subtypes

Dr Schloeffel listed eight clinical subtypes of CFS:

• Post infective CFS with ongoing infections (Mycoplasma, Chlamydia pneumoniae and viral infections)
• Lyme disease CFS
• Gastrointestinal CFS with severe stomach and bowel dysfunction, particularly bowel dysbiosis, and food sensitivities and intolerances
• Endocrine CFS - thyroid imbalance (Wilson's syndrome)and or insulin resistance and hypoglycaemia
• Sleep dysfunction CFS including possible sleep apnoea
• Autonomic dysnomia CFS with severe hypotension and POTS (postural orthostatic tachycardia syndrome
• Fibromyalgia CFS with dominance of myalgia, sleep dysfunction and fatigue.

He said the classifications are broad and definitely overlap with others. Putting patients into these groups helps in their management and improves their outcome, if managed correctly.

Treatments used are diverse as it is a matter of treating the symptoms that are presenting as they present. “I’m used to working with people with chronic fatigue syndrome,” he said. “You have to be empathic, passionate, patient, you need to spend time with them. You need to care about what’s happening to them. If I can’t get them better I will support them. When we as physicians try to treat you and work with you, we need to at least care about you even if we don’t understand the disorder.

We need to give you a proper diagnosis because if you don’t give have a proper diagnosis for chronic fatigue syndrome, they then say you’re depressed, just go and pull your finger out and get some exercise or whatever. Because if you don’t establish a correct diagnosis then you don’t know what you’re treating” he said.

I have been looking after some people for over 20 years and some of them are much better and some of them are worse and some of my patients are life-threatened. I take this illness very seriously. I am in this for the long haul and hopefully when I retire there will be other people behind me doing this sort of work. But this illness has been around forever.”

The formal launch of the Newman’s Own Foundation grant followed the seminar. This was followed by a party celebrating the Society’s 25th Anniversary and there was a scrumctious chocolate cake (full gluten/dairy/everything!) with a blue butterfly logo icing decoration.

Special thanks go to Dr Schloeffel, the staff and management committee for all their hard work organising the event and particularly to Greg Dunn (our Treasurer) who did a commendable job at being the event MC on short notice. Thank you also to Complex Solutions from Rosehill who donated the fabulous cake, Pagesmith from Parramatta who donated the party decorations and Bestever for the pass-the-parcel party favours.

The Society is currently investigating ways of getting the information in the seminar to members and we will keep you updated as the result becomes available.

UPDATE: The DVD of the seminar is NOW AVAILABLE from the society at a cost of $10.