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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hello @seekinganswers789
I too cannot participate as I have a number of secondary conditions now after 40 years of this horrible disease. I suspect the stipulation that those with additional conditions cannot respond will exclude many if not most of us, especially those who have been ill for many years.
I wish you every success in your studies. (Some decades ago not long after Noah landed the Ark I too did a psychology degree and was all set to continue to work as an educational psychologist until ME intervened. I now view that as the only positive spin-off that ME provided in my life. )
I would say that the issue that makes ME/CFS more isolating than other chronic illnesses/disabilities, and may therefore make online support more important, is the attitude which has arisen from the incorrect yet widespread belief that it is not a real illness. This fallacy appears to have been deliberately created and disseminated by a small-but-influential group of psychiatrists. It has resulted, and continues to result, in rejection, disrespect and a lack of effective treatment. The media have ridiculed us, friends and families have treated us with contempt, benefits are refused, leaving us in poverty, often losing our homes. Many of us in the UK dare not even mention the illness to our doctors due to a justifiable fear of how they will react. At worst, we may be pressurised into undertaking exercise, turning a mild or moderate illness into a severe one.Mel9 – I understand why some are far from keen to take part, especially when the word ‘psychology’ comes up. However the subject areas I’m looking at, i.e. social support and social identity seem to be relevant to everyone, regardless of their age, health status etc. but wondered if the isolation experienced by debilitating conditions such as CFS/ME, would make online groups even more important. We shall see..
Thanks again for your feedback and support.
This has nothing to do with this particular survey, but I still feel like mentioning this here. One of the very first things the doctor told me after giving me the diagnosis was that I shouldn't google or join support groups etc, because "it's not good for people like you to cling to each other"...
There is nothing inherently wrong with psych based studies. We should not be trying to stop psych studies, but we certainly should be making sure they are done and reported properly, and kept in their proper place in the scheme of things. If we want psych studies done that way, then we have to be prepared to get involved in and support the better ones.This kind of thing needs to stop on Phoenix Rising. Every time a research thread like this is posted, the member posting gets personally attacked, has their education insulted, members start blaming them for things they have nothing to do with etc. These are all rule breaches.
and it seems to be very common for sufferers to find face-to-face and telephone interactions exhausting, hence the preferability of non-live ones, notably online, where we can go at our own pace.In addition to the isolation that comes from the general skeptical attitude towards this illness, there is a another form of isolation ME/CFS sufferers experience (the more severe sufferers), one that stems from the nature of the illness itself, whereby the very act of interacting with others worsens their condition.
This is a wicked form of isolation.
If this thought could find a way into your research project @seekinganswers789, it would be just great, all the more since most people simply can't fathom such a thing: No matter how desperately some patients need support from a group such as this one, they must refrain or else they get worse (or they simply just can't - read and write, that is).