Search results

I skimmed the info, so I may have missed stuff. I had a hair analysis a few decades ago. It didn't show up the usual culprits: lead, mercury etc. But then again perhaps techniques and expertise have evolved. IMO everyone has some heavy metals in their body. These metals have been used for...

Hi @Trish Thanks very much for clarifying! Canada needs more detailed guidelines. The UK guidelines would be a good example for here. It's likely each Province and Territory has their own guidelines, but also likely they are not detailed. I think medical personnel in Canada depend to a...

I was relieved and very happy to see GET is gone. And, was thinking about sending the new guidelines to institutions in my country, but after reading criticisms of this guideline, and the potential for GETers to just rename it and carry on, I'm not sure about sending the guidelines out. What do...

Totally agree. IME, doctors don't want to see any negative emotions. Following that NHS guidance to reveal one's feelings could lead to a mental illness diagnosis, and possibly to ignoring further testing, and investigations of one's symptoms as physiological.

@John Mac Would it help if people outside the UK sign this petition? I think it's time for legal action. Reframing GET with a new name, or just refusing to drop GET, and continue to use it flys against the science as we know and understand it. How can these health care practitioners say they...

This looks like it's going to be lots of work for groups and individual activists to educate pwME, their families and the public. Oh, yeah, and health care workers.

This case aside, it does bring up the question of what are the plans for disseminating the new guidelines? It seems there are often gaps in communicating updates. At any rate, patient advocates may be busy. I know it's an ongoing task in Canada. I hope the policies and guidelines for Scotland...

@Invisible Woman you point out a question and idea I have had for a thread: Can You Manage Your ME? But I have gone off topic. Excellent points, @Invisible Woman

I hope eventually, neurologists will see the light. IMO there is proof of neurological involvement if they'd only look for it.

So hunting for physiological abnormalities to prove the condition is psychological? Imagine leaving these people under a psych umbrella if physiological abnormalities are found. :eek: And, as @Sean says, FND is a non-existent category.

Yay! 101%

I think here again, more circular issues. For example, poverty can certainly cause anxiety. But, faced with an anxious client, the idea that poverty may be an important factor or cause may not be considered. The client or patient is just processed through a CBT program in order to learn how to...

I think you're right @strategist about mild syptoms just seeming normal. I think if someone has a condition for a long time and it's bearable, then it might just fade into the background for them. I usually have leg pain with walking. It can get so bad I have to stop, and wait till the pain...

When I read psychosocial factors, I always think of the issues or situations where psychotherapists can blame the chronically ill person for being sick. Such things as poverty, unhappy/problem family background etc. Not issues such as @rvallee noted like, social safety nets for disabilities...

Yes. Once again, going around in circles.

So what is the desired end here? To erase all, or most disease differentiation? Rename everything Fatigue? Maybe Fatigue, with ranks to at least provide some difference between all the fatigue states. To provide the same treatment for all diseases, that is GET/CBT? One disease I can think of...

Yes, thanks @Hutan. I think I had forgotten, or wasn't originally aware ME experts were diagnosing these people. It does makes sense specialists would do the diagnosing. I was thinking it was their own regular doctors. However, back deep in the recesses of what's left of my memory, I think there...

The misdiagnosis issue is an absolute must to deal with. These goof ups show up some medical practitioners as very slack indeed. They need more than just education about ME! ETA: I wonder if the misdiagnoses problem will be written up by Dr. Nath et al.

Yes, ME/CFS is different. Page 4 of the Canadian Consensus Criteria for ME/CFS provides a chart with responses to exercise for pwME; references provided. One examples is oxygen delivery to the muscles which is impaired in ME, and not in healthy persons. It's unlike other diseases, except...

Here is the article I've mentioned. I've posted it some time ago too. It was amazing, and yet shouldn't have been to see the percentages for misdiagnosis with CFS or ME. One scientific paper noted 40% of patients, and the second one noted 54% of people as having been misdiagnosed with ME...