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I used to innocently believe that I could assume an effort towards accuracy and integrity in scientific research and that the results are the results. I don't anymore, and I don't trust the institutions that should be safeguarding quality anymore either. It's a sad thing.

Why? How? Based on what?

I'm sorry you are having such an awful rough time. Thank you for letting us know how you are doing. I don't think it's surprising that you are feeling angry. I hope your pcp helps you make sense of everything and is helpful.

As of this morning the petition letter says this (there is no no.6): I haven't followed all the detail of the discussion of content above, and what may have been altered (?). I haven't the energy to clarify if/how it's been changed and I'm not comfortable if a petition letter might be changed...

Interesting interview. I would hope re: the training video mentioned that obvious misogyny would be obvious, and that it wasn't just evident to Pimentel. I was kind of hoping he would give an outline of what current research is showing and save me the effort of finding out.

@Kalliope - It would be a good idea to make it obvious that people from any country can sign, I think

If there weren't substance to the criticisms of PACE nobody would have been persuaded to sign the letter to the Lancet. No one would have done so purely because of campaigners or activists whinging about not 'liking' the paper or the therapies. It's sad that Sharpe protests in the manner he...

:thumbup: for the rant.

@sb4 Re a chocolate dessert - Have you tried looking into recipes that use avocado as the base to make something similar to a mousse? I've eaten this before, but never made it (someone else did and once I bought it) so I can't recommend any recipes. It tasted good to me.

I don't think I've seen funding figures mentioned as a category - ie the lack of funding.

To me this seems to be, in effect, a marketing exercise.

My conclusion is that the medical director of the Mayo Clinic has a 'belief' about ME, or something unethical is taking precedence over the interests of patients. @dave30th - will you be producing an article about Cochrane? I seem to remember you saying a long time ago that you might. Please...

@JaimeS @Alvin New thread? I think it's a great idea and I hope you get a good level of interest

I can be happy with 'malaise' as a term if I can be sure my doctor/s and other health professionals understand the term in it's medical usage and take the time to learn what it means in ME and what it means in my case. As for the general public, family and friends, misunderstanding of all sorts...

It would be great if someone who was an S4ME member and would liase with patients here were to join PAG.

I agree - modern technology allows for many easy ways of engaging with patients; there's little excuse. I'm becoming increasingly uncomfortable with the voice of patients being selected and filtered, and a few organisation reps speaking for us. Can't articulate it well but it's too opaque and...

I find that helps usually too. I use the terms cognitive dysfunction/impairment or brain fog depending on the situation. Brain fog is easy to type, but doesn't fully describe imo. My progression is a little different, but yes I have one. It didn't seem to fit Leonard Jason's PEM...

Thanks @JaimeS, that helps too.

Does anyone who gets brainfog experience it as a delayed exacerbation with PEM? With me it worsens more immediately, just wondered if that's always the case.

Hmm - should have taken more care in what I wrote. Have edited.