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I take your point about the use of the word response but that's why I said treatment-response bias - not just response bias as per the questionnaire. At that point in the treatment you might genuinely believe that is an accurate picture of how you're doing - even though it's not. It's an...

In addition we have another bias - perhaps motivation might be a better word. Patients often need to keep these clinics and therapists onside. It is often the only source of support they will have when dealing with employers, the Benefits Agency etc. In addition letters written by the clinic...

Treatment - response cognitive bias. If you respond to the treatment then it is inevitable that cognitive bias is a part of that response.

This is just awful. We see so much around this topic as a community that relies heavily on the internet, we're even accused of it en masse as "militant" activists when straw man articles crop up. We say that social media companies should do more, and so they should. Who are the people and...

Edit - from MSEsperanza's post above So the old guidelines that left the majority of patients exposed to risk of harm weren't controversial because a small number of well placed people were happy. The new draft guidelines that rated the evidence properly, agreed about the risk of harm but...

I think this is precisely what they will try to do. I also expect to see more gaslighting of the ME community. Poor quality papers & articles have a double benefit for them if we don't challenge the science, then it all.sounds reasonable to the fresh batch of fodder for the clinics. If we...

Decades. An ME patient I met was sectioned for comorbid mental health problems, though of course as far as the psychs were concerned it was all down to his mental health. His meds caused him some agitation that could only be eased by constant movement, rocking, pacing the corridor etc. He got...

Quote from @Wyva's post - 1st post in thread Well, no...no one emphasises PEM as a disease, except maybe PG. It is an exacerbation of existing symptoms possibly along with a flare up of normally dormant ones. I can't recall anyone referring to it as disease in and of itself. It is a...

Please forgive my ignorance but what does BOPIC stand for - as in "BIPOC children" in the 3rd tweet.

Indeed and the other aspect of using sedentary controls are these people are sedentary by choice. That may also have an impact on how they think & respond to questionnaires.

This was one of the arguments put forward to get patients to support PACE. It would "prove" once and for all.... :rolleyes: If they're genuinely interested in learning more about the condition and patients welfare then they shouldn't have a problem supporting this research. As for patients...

What about the CFS clinics themselves? Whether they follow BPS ideology or not surely they can't deny that such a project might be useful - even if it was only in the hopes they're proven right? Maybe asking the clinics to put a poster on their noticeboards for patients? Or post provided...

My old GP practice used to send out quarterly newsletters - they were keen on patient participation. Practices that do that might include a link in their newsletters? My GP's website allows you to also request repeat prescriptions via their website - except for me, for some reason unknown to...

before the pandemic I woukd have stuck my head above the parapet and asked about a poster to put up in my GP surgery. It's harder to get in there these days than to wander into Fort Knox, though. There is a small noticeboard on the pharmacy though..... I wonder if online pharmacies &...

More like the BPS crew don't like ME patients asking awkward questions and asking for enough information so they can give informed consent to treatment. If new patients became aware of many of the problems they might have fewer participants in their research.

Maybe it's just something completely different but I get what I call the shakes quite badly if I'm not careful. It can affect all limbs - especially ones used most often as part of PEM. It is most annoying and noticeable in the arms and hands. I soon learnt that when this happens it is...

I'm not now, maybe shame is a bit strong but I was definitely a bit embarrassed by it when I first became ill and it dawned that people now looked at me like a was pond life - sometimes people I had bailed out of trouble of their own making too. Then having had people behave aggressively...

When you reached 80-90% improvement - was it that you felt that much better or could do that much more (less the burden of commuting & working) without feeling worse?

IBS is another condition that has the same issues.when it comes to how patients view and report symptoms.

And there it is in a nutshell. Pacing, however well you manage it isn't a cure. It simply stops you feeling worse. It may, if the stars align with everything else that affects us from temperature, levels of light & sound, allergies and so on, permit a brief lessening of symptoms that feels...