Search results

Hi @mariovitali, since the mid 1980’s we know that about half of the patients with ME have needed to have their gallbladder removed (from Osler’s Web by Hilary Johnson, p 28???) in my case i had lab-confirmed EBV onset with liver involvement (elevated liver enzymes and lots of pain, ultrasound...

What do you mean by total incoming money? I assume the amounts given post illness are total including disability benefits

This sentence is a bit misleading in my view. It seems to assume that if you manage it properly from the get go, that you may avoid a lifetime of chronic illness and disability. I disagree with this. i think we can all agree that pushing exercise and continuation of normal activities is harmful...

It is an interesting study, with a good number of respondants (600+). The limitation is that it is a self-report study and that some of the answers are applicable only to Australia with its unique health care system,social service structure, vast geography, acceptance of the illness, and such...

At page 3 of the recommendations, it reads that BP should be taken at 10 minutes intervals, during a poor man tilt table test, was it a typo? Should it read 1 minute interval instead?

We are veering off topic but i will add this about Dr H. It is always bad news when a physician chooses to work outside of our socialized health care system here in Canada. The Healh Care Act promotes ‘health care for all regardless of the ability to pay’- this doctor cherry picks patients...

The problem resides in getting them (the media) independently verifying the information. Where will they turn? Science Media Center. Where the information is all ready and packaged for journalists. Then they will check reputable sources such as Cochrane (!), UpToDate (!) and the CDC (one is...

Top reasons ME research is an opportunity: 1) opportunity for government to affirm that equality is one of their most imprtant value 2) ME shares many symptoms and presentations with other diseases such as Ms, some rheumatological diseases, some neurological diseases. It is an opportunity to...

Indeed i was being sarcastic! I have a difficult time coping with the concept of catastrophizing as it applies to pain psychology research. They seem to be using that terminology for unexplained pain as opposed to cancer pain.

How about catastrophizing... does it show on the images too?

Re: mobility aid. There is nothing to be embarrassed about by displaying mobility aid. You will find that people will give way, open doors, be kind and even give away their seats or their place in the line. You will see kindness in people’s eyes. What I find great about my scooter is that...

In my experience, the simple walk to my car will give me indications of my capacity for outings, and will determine how long i can go out for. My particular symptoms determining that would be headache or lightheadedness, the amount of tinnitus, and how much lactic acid fills into my legs as i...

There has to be a special space in hell for people designing such studies. Seemingly medicine and psychology have learnt nothing from medical history (i have stomach ulcers and multiple sclerosis in mind)

i respect what you say, and indeed it’s good to have independant researchers, but research collaboratives have great advantages too. i am all for research, and will take whatever results that will make a dramatic improvement in patients’ lives. While we are pressing our governments for more...

I have Raynauds syndrome so getting my extremities cold can be painful. However i have noticed that i do better when I am a little cold, as vasoconstriction is POTS’ best friend, as opposed to be too hot. In regards to your second comment, Jarred mentioned that he was limited in the amount of...

I guess everybody will make their own decision in that regard, just like using a heating pad. The application of cold will be self-limiting, and for the most part when it gets uncomfortable, the person will have enough sense to stop cooling their heads. And it was my understanding that Jarred...

If you enjoyed the Symposium (especially those who watched from home, or are awaiting for the replay on YouTube), consider making a donation to support the work of all these fine people. They are making progress and more are joining their effort, but the work is still slow due to the lack of...

Well, one would know if there were controlled trials for this. Then the patients would be able to tell their doctor that x patients out of a 15 patient cohort seemed to have improved compared to healthy control who did it too. And by controlled trial, i mean there would be a protocol in place...

Hi @Laurenkay, I understand your disappointment however this is how science and clinical trial work! In order to find out whether a drug or a product works in a patient population, we need to test for response against placebo response. This is a normal and required phase to go through. While...

What matters though in a biomarker is, can it discriminate between patients with ME and other diseases that causes brain inflammation?