Search results

But I recovered from my perfectionism; why am I still ill?? :cry:

Glad there is a discussion of the effect of different diagnostic criteria on their findings in section 3, where they specify percentages for different case definitions of ME/CFS.

Is the CPET angle not going anywhere either? :( I thought it was

Is there any point in emailing them to ask what case definition/criteria they are using?

Has anyone written a letter to the CMOs about this?

How can this be changed? It's dangerous and giving cover to anyone who wants to take advantage.

Who has standing to complain to the RCGP about the Paul Garner involvement in the Long Covid webinar? I am sure many people would find his inclusion unacceptable if they knew the context of what he has been doing. Is it widely known?

I was going to say this! I used to see those people in the park at the weekend before I got ill, being shouted at by a man in an army shirt and carrying a heavy bag, for "training" on a Sunday. Who is going to tell him that it's not military training? You're just paying someone in a...

Seems Paul Garner is going to be speaking on an upcoming RCGP webinar about long covid. Very disturbing news. https://rcgpportal.force.com/s/lt-event?id=a1U1i000006D4uyEAC&site=a0d0Y00000AeOP6QAN

I was going to write a comment asking why these particular authors would be pursuing this particular project, but I see @Andy has already answered the question!

Completely agree with this post, as the person needs to really understand the issues as opposed to just being an arbitrary patient, however careful one is in the selection. One would hope that everyone involved understands the problems about the case definitions and that ME/CFS is not...

Would it be possible to have a few different patients with ME/CFS involved, to represent a diverse range of experiences? Specifically, someone who is on the severe end? It may be hard to find someone who is well enough, but this seems very important. Many of us do not recognize the lives or...

"DxTerity is sponsoring the CHROME study. DxTerity is a Los Angeles-based research company that uses state of the art technologies to analyze DNA and RNA. They also developed the DxCollect® Kit (used in CHROME) for easy at-home collection of fingerstick blood samples. DxTerity will be analyzing...

I have really appreciated your posts about this and it's really important to keep talking about it. It's something that should be easy to grasp.

Same. It would change all of our lives. Has anyone here *not* tried this at some point in their illness? I doubt you will find many patients who have not tried gradually increasing activity. Zooming out a bit, it is so bizarre that there is still discussion around whether or not doing the very...

Additional comment: I have ME/CFS (although was doing really well), so at first I didn't know whether others with long covid were also experiencing PEM and thought maybe I was a special case due to my long-term ME/CFS. But when I saw the patient-led survey data PEM was near the top of their...

Many people have PEM. Why is this not being looked at? My own life has been devastated by long covid. I know there are many others - a huge number according to Patient Led - with PEM, and it's pretty insulting that this is not being reported generally.

I fear that having knowledge or important awareness of context is being interpreted as having "biases". I am concerned about an approach that is giving equal weight to different "feelings" people have. The point is, who is right? Are there serious methodological problems or not, for example...

I am still waiting for them to start asking people if they are experiencing PEM. They are tracking "low mood/not enjoying anything", but not PEM. Does anyone know if there are plans to include this? I thought I read that they were going to start tracking this, but perhaps I was mistaken or...

I have actually been quite shocked at reading the victim-blaming here on this thread; non-sequiturs and comments regarding "actions" of a "minority" without an explanation of how this bears on the matter at hand. Just trying to shift the blame to pwME for their own mistreatment. Sad and...