Nielk
Senior Member
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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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The thing is that i believe we will not get better unless they find out how to treat this illness successfully in most cases. And doing this needs a lot of money and also a change in attitude in many places, like universities, politics, etc., i guess. And as long as people hide, this change will probably never happen, unless it comes from outside of a country, which in the case of the UK will probably be what happens. There is somehting to lose, i agree, but i don't see how one could win without going public.Honestly, I wouldn't want my name associated with ME on the internet, for several reasons. If I meet someone new socially, it's not unlikely these days that they might google me and I want to be in control of whether, who, when and how I tell about my illness because not everyone is able to handle it well and many people in the UK assume it's a mental illness or malingering. Also, if I ever recover and apply for a job again, google could again show my potential employer my former diagnosis before I even have a chance for an interview and I think that that would be the kiss of death for my job prospects.
I have a great deal of respect for those who do go public in the UK (or anywhere) with their illness and the charities have found some people willing to be the human face of ME but I think there is a great deal to be lost by going public with it at this time and once it's out there, it's out there. You can't get your privacy back once you've lost it. It's like the middle ages here in the UK for people with ME and we're the new lepers.
So, I support them in their anonymity but I really hope they insert those links to the IiME!
The thing is that i believe we will not get better unless they find out how to treat this illness successfully in most cases. And doing this needs a lot of money and also a change in attitude in many places, like universities, politics, etc., i guess. And as long as people hide, this change will probably never happen, unless it comes from outside of a country, which in the case of the UK will probably be what happens. There is somehting to lose, i agree, but i don't see how one could win without going public.
It's cost/benefit, I suppose, and each of us will have different factors playing into that. There are people in the UK who go public - it's just that my personal choice is not to do so and I can understand why the IiME supporters doing this project wouldn't. There is also a third issue that I didn't mention, and that is the threat to incapacity benefit. I don't find it unlikely that if people doing such projects gave their names, the DWP might judge them as being fit for work and stop their disability benefits.