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My response (if i had the ability) would be however in ME/CFS GET worsens patients physical condition and trying to brainwash them into believing they are not ill is not legitimate medicine nor considered ethical behaviour by most medical systems. Telling MS patients to believe they don't have...

Now thats clever

It appears either many patients who had never met each other spread over many years looking for treatment for a disease that is being maligned are saying the same thing which is different then your claim. And they have given personal examples. Also it appears you don't want to make any public...

No argument but its "funny" that it gets more research money then a debilitating and sometimes deadly disease. I think posters are just blowing off some steam over this injustice.

Someone could develop a lightning process treatment with two pieces of paper to jump on, one says don't be like George Costanza and the other say my hair is growing back. Then we do a sham study to prove it works, and charge high prices per course of treatments

Came here to say this :woot:

I don't claim to know her motivations, perhaps its public exposure, get a PACE pusher to try and beat her down in public to make him look foolish? Perhaps its just cognitive dysfunction. In the end one cannot make a blanket statement saying attacking the alternative fact establishment is a bad...

I don't agree, she is pointing out examples that have worked for some people. Now i am not interested in dangerous experimental medications but they have worked in some cases, i'd like to know how many and why they work personally but she is not a doctor who is violating an oath, she is a high...

From skimming the replies in this thread here are my thoughts, as mentioned drugs are used off label, which is good and bad. It allows unconventional treatments to be tried, but i would like to see any drug that shows promise be tested in a larger trial to determine efficacy. That said for some...

Yikes, this report reads a lot like mine :emoji_astonished:

I could point out things as well but it would bring the same circular discussion back.

I agreed to stop making points to reduce stress, so you will have to decide should i be replying or not? If yes then i don't want to be put on moderation later or hear complaints about me causing stress or headaches or problems regarding this issue. If no then i suggest dropping this.

Right now if i can learn how to get my to do list completed i would be ahead of the game Besides the language police would easily catch me since i am very slow. :D

Je ne parle pas français :woot:

I do not have any personal issue with it, i am saying my counter arguments and examples are ignored. I agree with you here, my point is that i presented examples that are ignored. Yet you have other private forums, if anyone can post it publicly then why bother with them at all. Again i'm not...

What your implying is we are afraid that protecting our interests is too dangerous because an organization that harms our interests will use it against us so we should let them have more personal information to use against us. Its interesting that we cry no censorship yet being asked to edit...

We can't do that, i don't know why we can't but the popular opinion is that we cannot for some reason :emoji_face_palm: If your correct then it speaks to my post about trust being earned. If they want to earn it back let them apologize for their harms, make amends where possible and chart a new...

I would make member only forums for members who are active or actually have ME/CFS or who are not part of agencies that support lies about our condition or try to paint us as militant, vexatious or a population of people who send death threats :emoji_face_palm: And interestingly closed forums...

Perhaps i have not explained my position properly, i have not said to ban them or anyone else. Giving access to private information to people who could twist anything they can to use against you is like a fox guarding a hen house. I am not saying don't be nice to your adversary, i am saying...

It has a robust taste It is a good source but i don't know if you can eat it often enough to counter prednisone induced bone loss, you may need to supplement