Currently a large majority of the worlds medical community appear inadequately informed about CFS/ME.
Basing their opinions on assumptions or outdated research often these people provide uninformed, confusing, negative and hurtful advice. The trick is to ignore these remarks (‘you will never get better’ ‘your not really sick’ etc.) give a kind, compassionate smile and refocus your attention where it is needed most. Think of it like water off a (fatigued) ducks back. If you find yourself getting angry, move on and redirect this energy into positive action rather than attempting to change these peoples minds. When your well again you will have plenty of time to go back and educate those who are still in the dark.
The Million Dollar Question- Where is your attention needed most?
The Million Dollar Answer- Finding one of the many medical practitioners that can help you regain your health.
First and foremost you must take healing into your own hands. Never completely outsource your recovery to someone else, no matter how impressive they appear or how sure that they hold all the answers. In doing so you lose power over your health and potentially waste precious time salvaging the pieces of useful information after they run out of ideas. Instead you need to be in charge of your own recovery, engaging the services of experts along the way to work along side you in regaining your well being. This is a subtle and very important difference I will write about more in the future.
What your looking when partnering with a health professional is someone to complement your own enthusiasm, knowledge, unwavering commitment, intuition and dedication with their clinical experience, medical expertise, cross referencing abilities, networks and in some cases ability to order certain tests, assist you in finding support and prescribe medicine.
So what are the options before you?
1. Going it on your own.
A courageous choice! Your certainly going to save alot of money and instead of spending hours in a waiting room you could be doing what you love most. At the end of the day you will feel 100% responsible for your recovery and the power will be well and truly in your hands.
However, do you really have what it takes to go it alone? Few of us do. Maybe your research didn’t cover the fact that combining medication x with medication z will cause you to froth at the mouth and grow a third eyebrow? Is it worth the risk?
Verdict: Cost effective. Empowering. Potentially risky and stressful. Odds are you won’t receive the best care.
2. Your local GP (doctor)
A safe option, avoiding the need for change and ensuring continuity. They will already have a decent understanding of your medical history, know your personality and hopefully possess a genuine interest in your well being.
However does you local doctor really know that much about CFS/ME. As a General Practitioner/Family Doctor they are required to be a jack of all trades and often lack the time to investigate specific conditions in detail. Are they up to date with the latest and constantly evolving research? If he/she has given the diagnosis its a start, but perhaps they feel a couple of weeks with your feet up is all that’s neccessary? Or to just relax and talk to someone about how your feeling? Or worse yet perhaps they think Myalgic Encephalomyelitis (the technical term for CFS) is a rare breed of African Fish.
Verdict: Your current GP is familiar with your medical history and may be well equipped to deal with your condition. But depending on the Doctor you run the risk of receiving dated or innaccurate advice.
3. An alternative or complementary health practitioner
Usually after getting fed up with the limited perspective of conventional medicine this is an option most CFS’ers turn to at some stage. They are faced with an overwhelming choice of alternatives all offering the chance to restore your vitality in a different way. Some may do so. Others may not. Each one of the many methods available (Chiropractic, Natrophathy, Chinese medicine etc.) will most likely contribute to your well being, but won’t necessarily get to the bottom of things.
In general alternative medicine is less challenging to your system (no toxic drugs) choosing instead to harness the bodies own innate healing capacities. It usually promotes lifestyle changes that will be of significant benefit in the long term and it takes into account the more subtle aspects of your condition. It’s greatest strength is that it chooses to look at the body holistically, not attempting to separate the parts from the whole. By choosing to limit yourself to one modality you run the risk of significantly lowering your odds of recovery. How do you know you have found the silver bullet?
Verdict: A wide range of possibilities where conventional medicine only offers a few. Less likely to cause harm to your system and with great potential to treat your body holistically. However I prefer to incorporate elements of this natural approach rather than rely on it as my primary strategy.
4. Finding a Doctor that practices holistic or nutritional/environmental medicine
There is a growing class of Western Medicine known as Nutritional or Environmental medicine. These are trained Doctors who specialise in the use of food and nutrition as a medical approach. Many of these Doctors also incorporate environmental and lifestyles factors into their protocols. You might say these are the most open minded medics in the Western tradition, treating patients holistically as opposed to soley focusing in on one particular area of the body. If you find one of these Doctors odds are they will have at least some experience with CFS/ME and will usually have a broad understanding of what is required to recover.
Verdict: Often a nice mix of conventional and alternative medicine in one human being. These doctors will generally have an open mind in their strategy for treating CFS/ME and are likely to be less expensive than the world experts. However due to the large variety of illnesses they treat may not have specialized knowledge of the condition potentially limiting the effectiveness of their treatment plans.
5. Highly Specialized CFS/ME Doctor or Protocol
I estimate there are up to 20 of these experts around the world leading the discussion on research and treatment in CFS/ME. At a guess I’d say there would be at most another 100 doctors who only see patients with CFS/ME. Whatever the number, the point is they are few and far between. And usually very expensive. Typically each one of these experts have published a study (or in many cases just a book) showing how they have helped return anywhere up to 70% of their patients to around 70% of their original health. (These numbers are very rough but indicate a general trend) And practically all of them have a handful of patients they appear to have completely cured. Once again, all using different methods. (This highlights the fact that each persons version of CFS/ME appears to be unique. And reinforces the idea that we need to develop internationally agreed subgroups to allow patient specific research and treatment.)
Verdict: In consulting with one of these highly specialised doctors you will hopefully be recieving cutting edge treatment. However depending on which one you choose it may break the bank and live you up shit creek without a paddle (classic Australian saying). There is something to be said though for sitting across the desk from someone who seems to really understand what your experiencing without having to open your mouth.
6. Any combination of the above 5 options at once.
My choice: At one time or another I have tried each of one of the options listed above and currently (21/8/10) have settled for Option 6. A combination. My primary carer is a Doctor practicing nutritional/environmental medicine and together we have consulted with a world expert. I have incorporated holistic/alternative ideas into my way of life and remain very much in control of my healing protocol. It is a relatively costly approach but alo very comprehensive.
Any one of these 6 options is a viable means of getting well. Choosing which one is right for you is a personal descision based your own and your potential health practitioners availability, commitment and ability. Remember there’s more than one way to skin a cat.
A good first step is to contact your local cfs/me organisation. While they won’t usually give a direct recommendation they likely will give a list of options. As Lou Reed once sung ‘It’s the beginning of a great adventure’.
Having one selected of the 6 options above you may want to return to Step 3 ~ Planning and Step 4 ~ Budgeting to see if it all still fits. When it does: