BBC short video: Chronic fatigue syndrome: Living with an invisible illness

https://www.bbc.co.uk/news/av/uk-no...gue-syndrome-living-with-an-invisible-illness

 

I'm starting to think that these pieces might be best just focusing on what ME/CFS is, rather than what it isn't.

Imagine going to a job interview and spending the first half of the conversation saying "People have called me lazy, untrustworthy, and a shirker, but actually I'm the opposite." The potential employer will leave the interview wondering why the potential employee has been called lazy, untrustworthy, and a shirker.

I wonder if it's possible to acknowledge the misunderstanding without dwelling on what ME/CFS isn't.

 

Agree, good point.

Nonetheless, it looks like a good video and it's on the BBC. Many thanks to Lorna Bryson for speaking out and sharing her story.

 

Not sure about 'low immune system'. Mine is too strong - preventing pretty-well all colds, flu, etc.

 

My immune system is definitely not right, but I don't know that it's too strong or reactive or whether it's "low". I'm not sure what that means.

If it comes up I tend to say my immune system doesn't seem to function normally.

 

pretty sure in my early years with m e that I caught everything going but then I forced myself out and about and socialising so of course there was more opportunity to catch things now having been mostly housebound for two decades I rarely catch anything go figure .

 

I’ve just watched the video and don’t see it that way. I thought this was a fabulous, positive piece that explains what the illness is like, addresses the prejudices that so many people still have (unfortunately) and leaves a strong impression about how bad the illness is and how much Lorna wants to live her life. I suspect that a piece that ignored what people really think wouldn’t be nearly as effective.

The job interview analogy would be going into a job interview where people on the panel already thought you were lazy and useless. You would want to address that if you wanted the job.

added: also, I think it makes the viewer realise how incredibly frustrating it must be to have a physical illness and be told but you’re just being a lazy teenager.

 

Not had a chance to look at this yet, but if it is that good I'd like to think it might be a bit of a BBC watershed, given how they have been so terrified to speak out for so long beforehand. But full credit to them for this ... be nice to think the BBC was getting back into some proper high integrity journalism on this subject.

 

I thought that overall, it was pretty good, but I also thought that it proved my point that, relatively, early in this illness, it can be difficult to put into words what actually is happening. I've used the battery analogy before, but it would be more accurate to say that the battery can only be charged back to half full, that it drains unreasonably quickly, and that if too much charge is used then you might not be able to recharge it for the next couple of days, if not longer, and that the level you can recharge it to may be permanently reduced. And even then that still doesn't describe it properly.

 

Yes, from observing my wife I see it as battery that is damaged, not just worn out. As if it charges much too slowly; as if what little charge it has can only be used much more slowly than normal; as if it can never be fully charged. For a battery this could be symptomatic of internal current leakage - energy constantly draining away within itself, wasted, to no useful effect. Only what little is left being of any use.

 

My immune system is dysfunctional and has changed over the last 30 years. I'm not sure whether catching flu or colds frequently or not at all is any indication of anything important with M.E.

My CD4 and CD8 lymphocytes are all below normal.

 

I prefer the credit card analogy myself where credit = energy.

As long as I stay within my credit limits and pay it off in full (on a daily rather than monthly basis, mind you) I won't be making myself worse.

If, however, I go over my limit and/or cannot make the payment in full (perhaps because of a bug, or ambient temperature swings) then I will incur a charge.

If my (energy) expenditure is always at it's maximum then I haven't enough to cover the bill and the charge and will incur interest (PEM). Unless I can somehow rest up more and offload essential tasks I will be unlikely to pay the next bill off either. Now I'm paying interest on the interest owed and the energy debt starts to rapidly increase and may well cause a crash.

 

The important point is that our immune systems do not work normally. Some research found that in the early years it was most usual to catch everything going then later the opposite was true.

Many of what we recognize as symptoms of infection are the immune system response so it may be that the immune system is not working properly rather than we are not getting infections.

Whatever is happening it is an important thing to look at.

 

@Mithriel yes, I agree it is important to investigate why our immune system morphs over the years.

What I find odd is when pwME rejoice when they catch a cold or flu and interpret this as an indication that their immune system is improving

 

Once again, no mention of exercise or exertion harming ME patients.