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BBC Radio Scotland - Friday May 12th at 10.45am onwards

Messages
47
Location
Scotland
@AndyPR @trishrhymes In terms of the human interest story, you're right there's a reason my photo kept popping up. We were prepared for the fact there may be a backlash but knew human interest stories get more coverage and sympathy. We want to keep this up in Scotland and will keep trying to get other people's stories out there, it's harder to hate a community you can put a name, face and story to.
As with any sort of success, luck, priviledge and connections play a big part.

We've learnt a lot and happy to share our strategy. I do think Phoenix Rising community is a newsworthy community in itself? Especially Prof Edwards involvement, his retirement and his support/fight for ME patients. Either a story focussing on or featuring P.R community, Prof Edward or Dr Shephard is interesting and definitely newsworthy. Don't know if P.R, Prof, Dr Shephard or any of you individually particularly want to be in the news/articles but there are several potential stories to consider.

In terms of patient's stories @Countrygirl comes to mind. I don't know many of your stories, it would be interesting to hear others. Local news is an excellent idea.

We're trying to set up MEAction in Scotland and focus energy on what to do next. Having a weeks rest so probably won't reply for a bit.

Just want to say a big, big thank you for positive comment on here. It's so nice being a part of a supportive community :). Sticking my neck up and appearing in press, I was prepared for and have received negative comments and some abuse. I don't give a crap as think I think what we're fighting for is much bigger than my ego but still it's nice to know that support far outweighs the negativity.

@AndyPR :eek: that's awful. Must be really stressful. Can't believe you're always so positive considering everything that's going on.
 
Messages
2,158
@emsho, thank you for telling us what the experience has been like. Have a good rest.

The Scottish experience sounds mostly positive, though I've seen worrying indications that AfME are pushing to be the advisors to your government on setting up of ME clinics etc.

The last thing you want is a repetition in Scotland of the MUS/IAPT or CBT/GET nonsense inflicted on us in England which AfME seem to support.

From your own bad experience with GET you will be very well aware of that, and that MEA should be the charity your government listens to, not AfME. I do hope the Scottish patient groups are able to get that message across to those in power.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
@AndyPR @slysaint @dangermouse Thanks, it was my first radio ever interview. I was so nervous I was shaking. Brain fogged out a few times, but hopefully only pwme can tell! Apparently we were also on Radio Scotland at 8;30amish and 4:30pm so think Scottish peops will be sick of hearing our voices. We got a few minutes at about 6:45pm on the news but darn selfish NHS hackers stole our spotlight ;).

I have just listened to it @emsho and I thought you were excellent!

Very well done!

When we need to find someone to speak publicly for us, we shall be knocking on your door. You're a natural!
 
Messages
2,391
Location
UK
Charles what did you mean when you said stress can cause ME, we're you just referring to viral stress or do you include psychological stress? Do you have evidence to back this up?
This is not a medical opinion of mine - not qualified. But itn't it well accepted that psychological stress can weaken the immune system? Or is that just an old wives' tale?
 
This is not a medical opinion of mine - not qualified. But itn't it well accepted that psychological stress can weaken the immune system? Or is that just an old wives' tale?
Just relistened to it to make sure my memory was correct. This is exactly what CS is talking about in the interview, he talks about how a combination of an infection and physical and/or psychological stress, which hampers the immune system, can potentially lead to ME. He does not make the claim that stress alone can cause it.
 

charles shepherd

Senior Member
Messages
2,239
Charles what did you mean when you said stress can cause ME, we're you just referring to viral stress or do you include psychological stress? Do you have evidence to back this up?

Please have another listen to what I actually said on BBC Radio Scotland last Friday !

I did NOT say that stress can cause ME/CFS

What I did say, and this is based on not only my personal experience of ME but also from taking detailed histories from large numbers of people with ME/CFS over a 30 year period, is that some form of physical and/or mental stress at the time of the triggering infection can be a co-factor in the subsequent development of ME/CFS

From a theoretical point of view this would fit in with the fact that stress can have a significant negative impact on immune system function. And if this occurs it could be then be producing 'fertile ground' for the development of either a PVFS or ME

Going back to my personal circumstances, where ME followed from from a chickenpox encephalitis (I caught chickenpox from one of my hospital patients with shingles):

I was working on what is called a one in two hospital rota (long since abolished here in the UK) whereby I was working on a very busy medical ward every day of the week from 9am - 6pm and in addition was on-call (with no proper sleep) throughout the evening and right through the night every other night for not only my own patients but for other medical patients as well, and for medical cases in casualty This was physically and mentally very demanding and I think it may help to explain why ME/CFS is more common amongst health service professionals - who are often very conscientious individuals who carry on working (as I did to start with) even though they are under a lot of pressure and are clearly unwell…….
 
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2,087
This was physically and mentally very demanding and I think it may help to explain why ME/CFS is more common amongst health service professionals - who are often very conscientious individuals who carry on working (as I did to start with) even though they are under a lot of pressure and are clearly unwell…….

Because no other profession is conscientious.

Charles, it's far more likely that health service workers are subject to more infections ( and maybe also vaccines) which would have a lot more to do with subsequently developing ME.

Working through an illness may or may not be a factor, I don't think we have enough evidence either way, but it's certainly not the preserve of the medical profession.
 
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2,158
Because no other profession is conscientious.

Charles, it's far more likely that health service workers are subject to more infections ( and maybe also vaccines) which would have a lot more to do with subsequently developing ME.

Working through an illness may or may not be a factor, I don't think we have enough evidence either way, but it's certainly not the preserve of the medical profession.

I don't think @charles shepherd was claiming that doctors are more conscientious than other workers. He is rightly pointing to the fact that in some jobs it's harder to take time off work when sick, and to work long hours. I had the same problem of working through illness when teaching in a setting where I knew if I was away my colleagues would have to cover, or the classes wouldn't be taught, and the students were preparing for important exams. That's when I got ME - and went on working for years getting sicker and sicker.

I seem to remember the observation that with the Royal Free outbreak, both staff and patients caught the initial illness, but a much higher proportion of the staff got ME, probably because they went on working while the patients were resting in bed being looked after!
 
Messages
2,087
I don't think @charles shepherd was claiming that doctors are more conscientious than other workers. He is rightly pointing to the fact that in some jobs it's harder to take time off work when sick, and to work long hours.

I appreciate that, my point is that in most professions these days it's hard to take time off, and regardless of profession some people just prefer not to take time off until they absolutely can't work. I would say most self employed people fall I to this category so if there was any relationship between ME and working through an illness, we should see a higher incidence amongst self employed.
 

SamanthaJ

Senior Member
Messages
219
I appreciate that, my point is that in most professions these days it's hard to take time off, and regardless of profession some people just prefer not to take time off until they absolutely can't work. I would say most self employed people fall I to this category so if there was any relationship between ME and working through an illness, we should see a higher incidence amongst self employed.
And all the people on zero-hours who risk being sacked for taking sick days.

I guess doctors, nurses and teachers have the double-whammy of being over-worked and exposed to more infections. My relatives who are teachers are nearly always under the weather with colds and sore throats. Though there are probably other jobs that fall into this category too.
 

charles shepherd

Senior Member
Messages
2,239
I don't think @charles shepherd was claiming that doctors are more conscientious than other workers. He is rightly pointing to the fact that in some jobs it's harder to take time off work when sick, and to work long hours. I had the same problem of working through illness when teaching in a setting where I knew if I was away my colleagues would have to cover, or the classes wouldn't be taught, and the students were preparing for important exams. That's when I got ME - and went on working for years getting sicker and sicker.

I seem to remember the observation that with the Royal Free outbreak, both staff and patients caught the initial illness, but a much higher proportion of the staff got ME, probably because they went on working while the patients were resting in bed being looked after!

Thanks!

These are the points I was trying to make

Many health professionals are exposed to more than their fair share of infectious diseases

Carrying on working when you are ill is something that many doctors do - especially when going off sick means that someone else is going to have to do your on call duties

There was no intention to even imply that it's only doctors who are conscientious
 

MEMum

Senior Member
Messages
440
Ah well, you just don't know me away from the keyboard, in real life I'm far nastier ;)

'Andy PR, so sorry to hear re your flat problems. Another ME Mum friend could well be facing similar in Rustington, having moved away to release capital to pay for treatment.

Thank you so much for all that you do with your keyboard, informing us of current research.

Love your sense of humour despite your circumstances