Search results

Bizarre, indeed. I am so sorry to hear of this appalling situation in Finland, @JES. I shake my head in dismay and am so saddened to think of all the helpless ME patients there. How did we ever get to such a shocking situation? And what will it take to turn this around? I wish we had...

I am not advocating for IV saline. My point was that desperate situations can result in desperate measures. When a parent is facing the prospect of having their child taken away and subjected to harm (GET) they are powerless to prevent, they may search for anything that may help their child...

Perhaps not, but children not being able to attend school on a regular basis does trigger misinformed "officials" getting involved resulting with the threat of children being removed from the family home and care if they do not submit to GET. Parents refusing to subject their children to this...

Thank you @Jonathan Edwards for the honesty and straightforwardness of your above statement. Your words are chilling to the bone when their reality is contemplated. But they also give hope in that change cannot happen until the sentiments expressed are brought to light and sink into the...

After you connect to the link that gives the 4 hr program, look to the right where it says "Living with Chronic Fatigue Syndrome 48 min 46 sec" and click on that. Then just the part on CFS will play. I thought the presenters did a very good job. The message that this is a serious, complex...

Excellent! Thank you so very much @Adam pwme. I hope your excellent videos find their way to the powers-that-be who need to have their eyes opened to the harm done by PACE and its supporters.

Another thing that has caused us a great deal of harm and needs to change is the notion that ME or CFS is "unexplained fatigue with no medical cause." The emphasis on fatigue is problematic and misleading in itself, but setting that aside for the time being is the notion of unexplained fatigue...

Thank you @Perrier for your eloquent reply. You are, of course, right. Your despair and cry for help for all those suffering from this horrible disease touches my heart. If only the powers that be would wake up to the totality of the suffering this disease causes to us and our loved ones...

I want to say one thing when it comes to comparing what the BPS bunch proposed as compared to what patients would propose when it comes to guidelines for this disease. The BPS ideas about ME or CFS originated in their minds with theories that are not based in reality. It is something they made...

Yes, Yes Yes. Thank you @duncan for these words of wisdom. So spot on and the basis of many of our problems with the medical profession. Thank you @Jonathan Edwards for starting this valuable thread and for listening to the truth of our experiences. It is the only way to start again. Such...

I look for leadership from the medical profession to act with integrity. Why is it that those who have dedicated their lives working with ME patients and have seen this disease first-hand, knowing it is a physical illness, have had their voices drowned out by the likes of the BPS bunch? They...

I'm sorry @rvallee, I don't understand what you mean. Can you please explain? Thanks.

This whole British thing is upside down. How can you have effective treatments/rehabilitation if you don't even know what it is you're treating/rehabilitating? Just because a few psychs made up this idea about "false illness beliefs/cognitions" doesn't mean it's true. Every ME patient knows...

Thank you for sharing your and X's story @Yayab. This treatment of ME patients is SO insane and infuriating. What is the matter with these people?!? They know absolutely nothing about ME. Not because they can't, but because they are so wedded to the "treatment plan" they have cooked up that...

While listening to this afternoon's presentations, one cannot help but realize how out of touch, incorrect, shallow, and harmful the CBT/GET brigade is regarding this disease. Thank you to the knowledgeable scientists/clinicians presenting at this conference. I do so hope this message gets...

CBT= Chalder's Beliefs Techniques

CBT = Can't Be Trusted

I also think that many of us have tried this on our own. I know I have -- over and over again. In the past, when I got to a place where I was feeling a little better, I would take on more with all the hope and positive attitude in the world. Only to find out it could not be sustained. To...

"Rehabilitation." What rehabilitation?? Every time I hear that word in regard to ME/CFS I want to scream. What planet are these people living on? The definition for rehabilitation: "the action of restoring someone to health or normal life through training and therapy after imprisonment...

How did you get it, Trish. So far I haven't been able to find it. Thanks.