It would be fair to say that most doctors know very little about Chronic Fatigue Syndrome (CFS) and even less about Myalgic Encephalomyelitis (ME). More often than not ME is conflated to CFS or ME/CFS, a practice that trivialises the serious nature of both illnesses.
Despite considerable biological evidence of the nature and severity of both conditions, such ignorance has fostered a culture of skepticism within the medical community which in turn has led to patients being labelled as ‘malingerers’ or ‘hypochondriacs’.
A common response is to regard the patient as the problem, rather than acknowledge a failure of the medical system.
You don’t need a medical degree to realise that this blinkered response can significantly add to the burden of the illness.
At present, although mainstream pharmaceutical options for treating ME and CFS are limited (Ampligen and Rituximab are being examined as candidates), there are many options for moderating symptoms, eg sleep medications for insomnia, non-steroidal anti-inflammatories for pain and headaches, and beta blockers for improving blood flow.
However even getting access to these widely available medications can be problematic if your doctor is not on board.
Your first port of call
CFS-savvy doctors are out there, if thin on the ground. In many cases these practitioners offer targeted treatment protocols which may be effective in moderating your symptoms. CFS specialists may also offer a more comprehensive diagnostic panel to rule out other conditions.
Unfortunately, inflexible government and medical dictates force these practitioners to operate on the fringes with often effective but unvalidated treatment protocols.
To find a new GP, whether for symptom relief or to investigate one of the many CFS treatment protocols, your first move should be to reach out to your local or national support group (google ‘chronic fatigue syndrome support group’ together with your location) or visit online forums and ask.
Detailed up-to-date practitioner lists are provided by some support groups on request, however due to the potential for ‘establishment’ harassment of these doctors, such lists may be handled ‘in confidence’.
The Support Group Database consists of nearly 700 support groups in 16 countries worldwide that offer support to people with FM, CFS and ME. The database is broken down by country, state and city and is an excellent starting point.
While you’re about it, is also a good idea to tap these resources for a referral to a ME and CFS-aware psychiatrist, as depression is frequently a secondary issue with the illness.
ME and CFS-friendly databases
- In the UK, ME advocate Janet Smart sends out a ME/CFS-friendly doctor list on request.
- The Doctor Database consists of 7023 doctors in 80 countries worldwide that specialise in helping people with FM, ME and CFS.
- A long list of CFS-friendly doctors in Australia can be found on the Phoenix Rising forum.
- Dr. Rosamund Vallings at the Howick Health and Medical Centre is one of New Zealand’s leading authorities on CFS.
- Erica Verrillo provides a list of US and Canadian ME and CFS doctors and clinics.
Tips for evaluating your doctor
All practitioners have their own style, their own set of expertise, and their own limitations. Even among CFS specialists, treatments and attitudes vary. Again, the ME and CFS forums can be a useful source of information, with personal experiences and the strengths and weakness of individual practitioners and clinics often discussed in detail.
It goes without saying, the more informed you are, the better choice you’re likely to make in choosing a health care provider. With that thought in mind, FM/CFS/ME RESOURCES provides some useful tips on the nitty gritty of preparing for a visit to your doctor, what questions to ask and how to best evaluate the skills of your doctor.
What to watch out for
You may receive a diagnosis of CFS after clinical testing fails to reveal anything significant — basically a diagnosis by exclusion. It is very likely your doctor will then refer you to a psychiatrist or recommend exercise which is shown to be ineffective and in many cases harmful. Keep in mind, such advice is ill-informed and outdated.
Be warned, treatment involving graded exercise therapy (GET) and cognitive behavioral therapy (CBT) can be harmful, with serious and long-term effects commonly reported. Psychiatrists (and physicians, and yes, even support groups) advocating this treatment should be avoided.
If anyone has a list that is not mentioned and you think it should be, please let me know.