Daily Telegraph: "Hannah Price: University and ME"

[Sasha]

DT redeeming itself somewhat in this excellent article by PWME Hannah:

http://www.telegraph.co.uk/educatio.../12203935/Hannah-Price-University-and-ME.html

 

[Old Bones]

Yes, quite a good article. However, after watching the video of Dr. David Bell's recent talk in California, I fear for Hannah's future. Dr. Bell said a number of things that coincided with my experience -- one of them being that ME runs very strongly in families. Most interesting, though, was Dr. Bell's explanation of the longer-term outcomes of his many young patients who became ill between the ages of 10 and 13, I seem to recall. They were initially presumed to have mono, but their blood tests were negative for Epstein Barr. This was my situation at age 12.

Dr. Bell continued to track his patients, and although those that became ill as pre/young-teens recovered, they all "crashed" in their mid-30's. Again, my experience. The virus that reactivated my illness occurred at age 32. Although I struggled to keep going for a few years, at age 34 my condition deteriorated rapidly.

It was heartening to hear a prominent doctor who so clearly "gets it". However, the realization that my situation isn't unique provides a particularly compelling reason why this disease needs to be solved before the current generation of young patients suffer a similar decline when in their prime.

 

[Esther12]

To be honest, I just don't really understand the appeal of these sorts of articles (from people of any background), so think that I might be unfairly harsh in my reading of it. I pretty much just skipped through it looking for any reference to facts and info.

However, with the new research, conducted by the University of Bristol, showing one in 50 16-year-olds have been diagnosed ME, it is clear that the struggles of continuing education with a chronic illness are common.

That's the recent Crawley paper, and that wasn't at all what it showed.

I don't want to be critical of a patient who is just writing about their experience, but I wish newspapers had a lot less of this sort of thing and a bit more of the sort of work we've seen from Tuller. I don't think that this sort of article does anything to redeem the DT for their spin and misrepresentation of PACE.

 

[Snowdrop]

OK so maybe I'm just an Eyore but I didn't find anything in this article that was in any way useful for those with \me or for others who might be informed about it.

Her symptoms were pretty minimal. There was no mention of how PEM works in this illness.
And there was no mention of how she came to improve which means the take away story is that -- you just get better. Maybe better with rest is implied and certainly that is important but she's been sick for some time now (11 years?) so she just rested her way to functioning. Has she been recovered for some time now perhaps.

It's not even clear to me, does she now attend full time and do all those things students need to do living on their own.

It just seemed to skim over/be light on any detail. Perhaps that is the restriction of the telegraph and what they wanted.

To me the purpose seemed to be to allow an article that could include T Chalder's statistic and by implication point to her as the go to person for young people with ME.
Just my opinion.

 

[jimells]

Thinking about this young person who has already lost a decade of her life is so upsetting I don't know whether to cry or rage. Or both. Thank god she avoided the grasp of Esther Crawley. Instead of university, she could've ended up in a locked ward.

I promise to do what I can to see that Sir Simon and pals are held to account for their many crimes.

 

[jimells]

I don't want to be critical of a patient who is just writing about their experience, but I wish newspapers had a lot less of this sort of thing and a bit more of the sort of work we've seen from Tuller.

Joe Sixpack wouldn't get to the end of the first paragraph of Dr Tuller's work. But he might be interested in a more personal story. I think both approaches to journalism are helpful for us - we just need more. A juicy story about a PACE person being arrested for fraud would be even better, but we are not quite there yet.

 

[Chrisb]

A juicy story about a PACE person being arrested for fraud would be even better, but we are not quite there yet.

....but who has been defrauded? Those who made the finance available got exactly what they wanted, expected, and needed. The policy appears to have been supported at one time or another by all major political parties, and combinations of parties, in the UK.

 

[sarah darwins]

....but who has been defrauded? Those who made the finance available got exactly what they wanted, expected, and needed. The policy appears to have been supported at one time or another by all major political parties, and combinations of parties, in the UK.

If it can be shown that the PACE authors had clear evidence of potential harm from GET and withheld or fudged that evidence, anyone who has been made worse by NHS-mandated GET would presumably have a strong basis for legal action.

 

[jimells]

....but who has been defrauded? Those who made the finance available got exactly what they wanted, expected, and needed. The policy appears to have been supported at one time or another by all major political parties, and combinations of parties, in the UK.

Yes, I see your point. Certainly both major US political parties are merely branches of the "Business Party". I assume it is similar in the UK.

The universities have been defrauded and their reputations damaged by hosting fraudulent research designed to benefit insurers. One hopes these institutions still have research faculty and students that care about such things, but maybe not. The PACE people refuse to free the data because it could be used to ruin their careers. Well that is an interesting admission that the data is career-ruining data.

Honest physicians have been defrauded, because they believed the harmful advice about GET that has been promoted by the psychobabblers. The mythological "taxpayers" have been defrauded, because they thought they were paying for honest research. And of course the patients have been defrauded, but who cares about them anyway, being Useless Eaters and all.

 

[Bob]

Her symptoms were pretty minimal. There was no mention of how PEM works in this illness.

Maybe she has mild to moderate functioning, with fluctuating symptoms...

It's also important to make sure you have a few people around you that you can confide in, and fall back on. Not everyone needs to see the crash and burn and the days where getting out of a bed isn't an option, but having the few that will come by to check on you or grab you something for dinner will make all the difference.

 

[sarah darwins]

DT redeeming itself somewhat in this excellent article by PWME Hannah:

http://www.telegraph.co.uk/educatio.../12203935/Hannah-Price-University-and-ME.html

Forgot to say, perfect example of why journalists need to read your excellent article regarding pictures, Sasha! - http://phoenixrising.me/archives/27244

 

[hellytheelephant]

Good article! But. The. Photos! Perfectly made up model in immaculate sporty pj's with freshly styled. hair. Things look ever so SLIGHTLY..different at my house

 

[Sasha]

Forgot to say, perfect example of why journalists need to read your excellent article regarding pictures, Sasha! - http://phoenixrising.me/archives/27244

Good article! But. The. Photos! Perfectly made up model in immaculate sporty pj's with freshly styled. hair. Things look ever so SLIGHTLY..different at my house

But at least it shows someone in bed and not in an office. The thing with these generic pix is that they're always like that, with the women with lovely hair and make-up - not just the ME ones but the MS ones, the cancer ones, and so on.

The public knows how to "read" them, I think - that is, they'll understand that this is an illness so bad that it can confine even a young person to bed. I think that's not bad, as a message. I think they can see past the make-up!

 

[hellytheelephant]

But at least it shows someone in bed and not in an office. The thing with these generic pix is that they're always like that, with the women with lovely hair and make-up - not just the ME ones but the MS ones, the cancer ones, and so on.

The public knows how to "read" them, I think - that is, they'll understand that this is an illness so bad that it can confine even a young person to bed. I think that's not bad, as a message. I think they can see past the make-up!

You

Yes,you have a good point, but,, the thing I am struggling with is my own reluctance for people to see me as I AM most of the time- not the tidied up, beautified version I can manage once in a blue moon. I hate it when people say 'You are looking so much better.' when obviously I am NOT better! Lipstick does not equal recovery, people!!! ( I am thinking of getting a t-shirt printed).

I am finding more peace and self esteem in accepting myself,and at the moment that person is someone who has delitating illness and looks rough quite a lot of the time. I can't always shower when I want to, i am allergic to most cosmetics and my clothes are now loose and comfortable, and don't need ironing.

I am proud to classify myself as a disabled artist and the reason that I call myself that is that it is almost impossible for me to get any artwork done- I basically can only work lying down now. I am building up the courage to have some photos taken of me working on my artwork- so that is basically me, horizontal ,with crayons rolling around on the duvet with me struggling to hold the sketchpad. It is hard to let people see that....but I hope to do that when I feel comfortable enough to do so, because we should all be ' out and proud' of every bit of ourselves that this illness has not stolen away from us. Sorry for going off topic.

 

[sarah darwins]

The public knows how to "read" them, I think - that is, they'll understand that this is an illness so bad that it can confine even a young person to bed. I think that's not bad, as a message. I think they can see past the make-up!

You shame me with your confounded optimism, Sasha!

 

[jimells]

The public knows how to "read" them, I think - that is, they'll understand that this is an illness so bad that it can confine even a young person to bed. I think that's not bad, as a message. I think they can see past the make-up!

I don't think so. Not even my own family will look past the photos. I've only left my neighborhood once since November, and that was only a 20 mile round trip. Even so, my sister expects me to ride a bus 500 miles to her house to attend my mom's 80th birthday party. I wrote to her that I would have to go to the hospital at the end of the bus ride, instead of her house.

People are more than ready to believe that everybody else is a slacker compared to themselves, so it doesn't take much propaganda to convince them that people who are sick for years and years without actually dieing must be Useless Eaters. I don't know how it is in the UK, but in the US there is a severe lack of compassion. It's OK to be sick for maybe a week. After that, it's back to the coal mine or the sick person is a bum.

 

[Sasha]

I don't think so. Not even my own family will look past the photos.[...]

I'm sorry to hear about your family's attitude - I agree that there are some people who have a mindset so strong that sick people aren't really sick that there's no changing it (until they get such an illness themselves).

But we can't judge everything by whether it will convince the unconvinceable. They're not everybody. We can only influence people who are willing to take on new information, and no amount of information - photos, research, anything - is going to shift the attitude of the rest.

 

[worldbackwards]

To be fair, if you're going to ask the media to stop using pictures of attractive, heavily made up women as the default choice for advertising anything, we're going to be waiting a long time.

 

[Esther12]

To be fair, if you're going to ask the media to stop using pictures of attractive, heavily made up women as the default choice for advertising anything, we're going to be waiting a long time.

Any excuse! There is a problem that realistic portrayals are not hugely appealing, but also not attention grabbingly horrific. It's probably difficult to find much over-lap between accuracy, and what will appeal to reader and photo editors.

It still makes sense to give them more options though, and some may value accuracy in and of itself.

 

[Sasha]

Any excuse! There is a problem that realistic portrayals are not hugely appealing, but also not attention grabbingly horrific. It's probably difficult to find much over-lap between accuracy, and what will appeal to reader and photo editors.

It still makes sense to give them more options though, and some may value accuracy in and of itself.

Bear in mind that I was talking in my article about the mainstream media (who have the largest audience and are the worst offenders) - and they're unlikely to step outside of their own conventions. But others, such as science mags and our own charities, have a different range of things that they're likely to consider for specific purposes.

I'm not saying that we should accept the beautifully made-up, though bedbound women in all circumstances - but to target our energies wisely by paying attention to the demands of each type of media/organisation.