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Thank you dear Doka Girl for your encouraging words. Thank you. The treatments have all been tried on our end; and they are not really effective. They spike the system, which then crashes horrifically. Or there are intolerances to so many meds amongst PWME. But your kind words have touched me...

If that is the case, how can it be solved?. If it is some tragic combination of genetics, birth defects, hormones, environment, toxicity, stress, etc etc, all these variations will be different in each person. This is all getting very dark.

You are indeed correct: 'we found this, this, this, and this.' Then in three months at another conference, again: there is this and this and that. Patients sit at the edge of their seats, and the real problem is never seized. But worst of all: I do not see any time line. In other fields...

After reading and reflecting on this thread, the obvious unarticulated questions are: and how many more decades will it take to arrive at something meaningful, if these are the results in 20 or 30 years? will it even be in my lifetime? perhaps another 50 years? perhaps more? perhaps it is only...

Yes, you get what you pay for. During the aids crisis Hollywood was even on board to help. The whole world as on alert. And with this, and the utterly stupid ‘fatigue’ name it’s hard to get attention. Plus, the majority are ill women, another negative. In aids it was men. At this rate, I guess...

http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf are all these studies also not worth much? how utterly devastating all this is.

After reading this thread, am I to conclude that ME research is still rather paltry? Still in real infancy? Still really floundering? Still without substance? still without real hope? what are we to tell those lying in dark rooms as quietly as statues, praying for relief? There was recently...

Dear Joh I don't know what to say; some doctors we saw in Germany are really OK and very sympathetic. However, all I was trying to do was to report what happened and how shocked I was. I was told that young people received the ECT and they were able to go back to school, thereafter. I suspect...

Dear Joh, If you read my posts in the other thread about my meeting with a physician who practices in Germany for many years, and who used this treatment for fatigue, you will learn that it has been used. And not only in Germany, but in neighbouring countries too. This physician prescribed this...

Whoever goes to this conference ought to pose the question: how often is electroshock being used in Germany to 'treat' CFS/ME, and should it not be stopped? Thank you.

Thank you Philipp for your interesting posts. I spent one hour with this physician, discussing ME. I did not, foolishly, ask if there is official approval for the use of ECT. I was just told that in this treating physician's experience the results were good, if there were antidepressants, and if...

I suspect ECT is not 'formally' approved. The term that was constantly used in the conversation was "off label," but "commonly done."

Yes, they don't speak the truth often. But I asked about whether it was approved in Germany. The physician said that ECT is used in many parts of Germany. The physician struck me as very conservative person, and the sort who would not deviate. The person was on the younger side too, but gave me...

I was told that there is no need to assess for depression in ME; electroshock was considered a treatment for ME, as well as stimulants in small doses. I was told by the physician practicing this that many patients are treated this way. I have no reason to disbelieve the individual speaking. I...

The doctor I spoke with was not 'fringe,' in the sense that this person is employed in a hospital. In Canada/USA ECT is not indicated for CFS, and no doctor would prescribe it. What this means is that in Germany (amongst the psychiatric community) CFS is considered a psychotic depressive...

Good day to all, I recently had a conversation with a physician who practices in the EU. This individual told me that electroshock is standard therapy in Germany and other countries for CFS. The doctor told me that antidepressants are given, stimulants and electroshock, as well as transcranial...

The comparison to cancer is really striking. It's probably like this with other diseases too. Even literary conferences generate more participants than the ME ones! But most worrisome is where they state that the disease is 30 years behind. What does this mean in practical terms for all those...

What you state Dr Edwards is pertinent. Yes, a parent is likely to seek all the help she can if she reads this is a multi system disease. We did this too; physicians encouraged it also. The treatments led to more suffering, but at rare times, some a little hope, which was then dashed. On the...

And how can this portrait not engender urgency!

When I watched Unrest, I must say, it was the first time that I saw depicted so many of the symptoms I watch on a daily basis, here at home. I was stunned to watch on film what I see non stop. There were some moments that were quite different. However, the crawling up the stairs, the sudden...