Doing Well

I’ve now had my third visit to the “CFS Discovery” clinic here in Melbourne – an odd name, but a fortunate discovery for me. Three months into my “detox” diet, initiated following a diagnosis of fructose intolerance by the clinic, I am doing well. In fact I’m doing far better than I ever expected, and I’m enormously grateful that this clinic exists. The doctors, nurses, and other clinic staff are terrific – professional, competent, thorough, and friendly. Following additional tests my diagnosis of “ME/CFS” has been confirmed using the Canadian Consensus Criteria. (A word here: the clinic uses the CCC and not the stricter Nightingale definition of ME; the clinic also uses the term “CFS”, however they treat the disease on a strictly biological/physical basis.) I will give further details of my diagnosis and test results in a later post. At the moment I’m still reading through the results and information given me by the clinic, and organizing all the medicines and supplements that have been prescribed.

Physically I’m now able to go out most days. I can attend meetings and classes (I’m taking a Spanish evening class), and can once again enjoy sitting in a restaurant or café (I can’t actually consume anything they offer, but my extreme noise sensitivity is gone) talking to friends. I can go for a walk or wander around the shops for one to two hours. I frequently skip my afternoon rest, and I sleep 7 – 8 hours a night. I must still stay within my limits – when I try to do too much (a yoga class, too much socializing) then I need more rest and the brain fog/general malaise returns. I am still sick, but the difference between now and a year ago is huge.  I have added a range of vitamins and supplements to my diet, but haven’t yet begun taking prescription medication (soon to begin). It is clear that in my case at least, the fructose intolerance (and possibly also celiac disease) is a key factor in my illness. I advise anyone and everyone with any kind of “mystery” ailment to get tested for food intolerances, fructose and lactose malabsorption, and to test for celiac disease. These problems remain unrecognized and under-diagnosed. 

Melbourne city center: after losing another 3kg since April, my once too-tight clothes are now looking decidedly baggy!

Random Thoughts on Healing

"Nothing herein should be construed as medical advice"

There is almost nothing more certain of bringing about a relapse than writing about feeling better. Four weeks of eating foods I normally avoid, in order to get tested for various food intolerances, left me with a noticeable worsening of symptoms: fuzzy brain, lethargy, stiff and achy limbs, and stomach problems. Now that the tests are over and I'm reverting to a wheat-free, dairy-free diet I'm picking up speed again. And I'm now more convinced than ever of the role of diet in treating this disease in some patients.

I'll admit I'm a little slow to catch on. Partly that's because I've tried avoiding different foods in the past with limited effectiveness; partly because there's so much information out there on the internet that I find it overwhelming, confusing, and frequently contradictory. Aside from the merest handful of doctors taking an interest in this disease, patients are left to scrabble around on their own in search of answers. This makes for a very large group of vulnerable people (estimated 17 million worldwide). Many are simply far too sick to use the internet or libraries; many are too sick to make it out of bed and into a clinic; many are just clinging on, burdened with other responsibilities such as taking care of equally sick children; most don't have the scientific background that would enable them to understand the published research papers that shed light on the illness.

A couple of recent readings are driving me forward at present. One is a recent blog entry written by a doctor who has ME, as do her daughter and husband. Dr Jamie Deckoff-Jones is read and appreciated by thousands of patients for her openness and willingness to discuss the disease and treatment that she is trying out on herself. It is worth reading as much of her blog as you are able:

http://treatingxmrv.blogspot.com/2011/03/treatment.html

I look in on the patient forum "Phoenix Rising" from time to time (with thanks to a good friend who encourages my participation). I avoid most of the patient forums, but this thread was brought to my attention and I found it interesting enough to copy and re-read:

http://phoenixrising.me/forums/showthread.php?1346-what-you-need-to-do-and-why

The tests that I've had to date show that I have a "leaky gut" problem (aka "gut mucosal barrier dysfunction") and a problem with fructose malabsorption. Unfortunately I have another 3 months to wait for further test results and my next appointment with the doctor. In the meantime I am adjusting my diet in line with the test results. The more I read the more convinced I am that diet underlies many health concerns. I would encourage everyone with any health problems at all (including mental health) to get tested for food intolerances and allergies, lactose and fructose malabsorption using the hydrogen breath test, to try and figure out if you have a sensitivity to salicylates, and to test for coeliac (celiac) disease – one of the most commonly undiagnosed health problems (it can be asymptomatic but still cause internal damage). Work with a recognized, qualified medical practitioner whenever possible. And read widely!