Myalgic Encephalomyelitis: International Consensus Criteria

The Journal of Internal Medicine has just published the ME: International Consensus Criteria. This document, prepared by a group of practicing physicians with a long history of treating patients with ME, is a practical tool to aid doctors in the diagnosis of ME.

The document can be accessed here.

Out and About

A participant on one of the ME forums commented a while back that those who recovered no longer hung out on the forums to share what they'd learned about getting well. Now I understand why: after four years with no social life and unable to enjoy every day activities, I now have no inclination to stay indoors tapping away on the laptop. I feel like I want to be out meeting people, going to every concert, seeing every art exhibit, taking every class, walking every path, shopping in every store, sitting in every café... the urge to get out and enjoy life is strong! So here are a few photos taken in the past few weeks as I get out and about here in Melbourne. Click on any photo to see a larger version of it.

My local train station. 

A foggy morning in North Fitzroy. Melbourne and Sydney are well-known for the cast iron decorations on many of the older houses. 

     

Carlisle Street: click on the photo to see the "Texas Milk Bar" lettering; the old milk bars are close to extinction. 

Sandringham Beach (no, not Norfolk!)

Sunset over Carlisle Street. 

             

Looking out over Port Philip Bay.

A different person

My older brother dropped by the house this morning. We hadn’t seen each other in over two months and he was taken by surprise:  “You’ve really lost weight – you’re almost a different person!”

I’m gradually getting used to my new body, which is both much slimmer and much healthier than last year’s model. Sometimes I think that I’ve been trapped in the wrong body for most of my life and getting diagnosed as fructose intolerant has been the answer to many previous problems.

After this long battle everything is getting easier. I now function at around 80% of where I think I should be for my age – compared to about 40% this time last year. I’m three months into my “gut healing” diet and a week into the pill-popping regime prescribed by my doctor. The only items of clothing that still fit are my socks. Not having worked for over three years my funds are a little low, so I can’t go out and replace my entire wardrobe as I’d love to. But I live in a swish part of town generously apportioned with charity (“opportunity”) shops where some careful searching finds me well-made and barely-worn clothes from up-market stores for just a few dollars. Clothes shopping for a size 10 “small” is so much fun – suddenly I look good in almost everything!

Federation Square, Melbourne: with Krispin Fernandes, visiting from Timor Leste.

Lyme Disease

I'm re-posting a post from Facebook because so many people with ME ("CFS") actually have something else, and very often that "something else" is Lyme Disease. Here's the post:

"I was dx'd with ME/CFS for 17 years before finding out I had Lyme, Bartonella and Babesia last November. Since being on treatment for the last 7 months, my life is returning! I am getting my life back after 17 years. My passion now is to ask all of my ME/CFS friends to consider getting retested for Lyme Disease. Even if you had tests and they were negative (mine was three times from 1993-2004), and/or even if you cannot recall being bit by a tick, or think you cant have it because you don't live in a "Lyme" state.


The usual test given (the ELISA test) to test for Lyme is 50-59% wrong Always. You need to get a western blot test at a reputable Lyme lab to accurately test you. I can help you with this with resource on Push Pin Angels.

This is my story that starts when I first found out I was Lyme positive till this week. I pray you all consider getting re-tested. There is a page on the web site above entitled "first things first..." that describes the process of getting retested, and answers your immediate questions.

Remember that Dr. Mikovits reported that of the ME/CFS patients she tested for XMRV, 40% had Lyme as well. And there are two other studies now reporting that so many ME/CFS sufferers are testing positive for Lyme.

Please consider getting retested? Thank you for reading this!"

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!