M.E. and exercise – when will they ever learn?

[Min]

I have not named any individuals Charles, please do not put words in my mouth.

.
@charles shepherd Wrote:

“We have made it clear that people with ME/CFS are not capable of performing fundraising events that involve intense physical activities such as marathon runs/swims/cycle rides, skydives etc and should not attempt to do so

This remains our position

However, for people with ME/CFS who have made a significant degree of improvement, or have recovered, and are now able to do a sponsored walk, or even something such as a half marathon if they have fully recovered and are now well, then this is an acceptable way of raising funds for a charity”


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But that’s not what’s been going on, is it Charles. The people who do the extreme challenges and Half Marathons do not say that they have Fully Recovered from ME



Not “Fully Recovered from ME” Not according to this article (an article which the ME walker/fundraiser had approved) that describes pushing herself to raise funds for the MEA with expectation of being bed bound for weeks:




‘Wirral girl defies ME illness to set sponsored walk challenge’

http://www.wirralnews.co.uk/news/local-news/wirral-girl-defies-illness-set-6569674

‘A TEENAGER who was diagnosed with ME at the age of 13 is to set aside her illness and take on a mountain-walking challenge.

Charly Poole, from Wallasey, is determined to raise money for the ME Association ... to help others who also suffer from the illness.

In July she wants to walk up Moel Famau in north Wales to raise as much cash as she can.

Charly, 17, said: "To a healthy person, walking up Moel Famau may seem little and ‘easy’ but for someone suffering from ME it’s like hell and could make me bed-bound for weeks.

"But I am determined to complete this goal for myself and for the charity."…..

… Charly’s grandma Joan Poole, 71, said: "It’s horrible to see her when she has to force herself to walk. And I’ve seen Matty have to carry her.”….


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There is currently yet another person (who says they have ME and been ill with ME for a year), Not “Fully recovered”, doing an endurance/fitness challenge to raise funds for the MEA, by doing the 'Zombie Evacuation Race'.


https://www.justgiving.com/Gavin-Ho..._content=Gavin-Holmes1&utm_campaign=pfp-share

“As a sufferer of M.E, for the past year I have decided that it is time to do something for a charity that will help with the condition for me and many others through their research and training. The M.E Association is a fantastic charity that deserves support and funding to continue it's great work. The Zombie evacuation is an obstacle race, where participants are chased by "Zombies"….”

http://zombieevacuation.com/

'The Zombie Evacuation Race Only the fittest will survive!!! '

'Run for your life through a 5km course dodging the UNDEAD and navigating a multitude of challenging obstacles designed specifically to slow down your escape from relentless ZOMBIE horde who are hungry for fresh brains! Survive or be become one of them!!



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Running a Half Marathon for the MEA but Not “Fully recovered” from CFS:

http://www.meassociation.org.uk/201...ner-emily-does-it-all-for-the-me-association/

Emily Wren, who is recovering from Chronic Fatigue Syndrome, took part in the Reading Half Marathon on Sunday (March 20) to raise money for the ME Association. Months of concern that her training schedule might be hijacked by her illness vanished as she made it across the finishing line



http://runningforme2011.wordpress.com/2011/02/26/do-i-or-dont-i/#comments

“It’s the day before the next race. Number 2 of 3. And i’m weighing up many options as I rest up.

I haven’t done any running since my 8k last Saturday, and I’m starting to feel a little bit nervous. Trying to train, live a normal life and not fall ill is proving to be difficult.

I haven’t done any running since my 8k last Saturday, and I’m starting to feel a little bit nervous. Trying to train, live a normal life and not fall ill is proving to be difficult.

This week has been really hard. Personal problems, both at home and work, have left me feeling exhausted and dealing with CFS symptoms as well as battling with a cold. Unfortunately this has meant giving running a back seat.

So here comes the big decision. Do I run 5 or 10k at the event tomorrow?”


.

"When will they ever learn? "

 

[charles shepherd]

I have not named any individuals Charles, please do not put words in my mouth.

Reply

If you look at your original post you will see that you named Emily Wren and provided a link to the announcement that we made on the MEA website at the time of her half marathon - which I why I explained what we did in this particular case

 

[Wildcat]

@charles shepherd just wrote to me (Wildcat) in post 114:

"You have now been told on several occasions that if you go to the MEA Facebook page you will see that there are plenty of posts that do not agree that a charity should be accepting donations from a fundraising event that involves physical activity

The only posts that have been removed are a few that involve abusive of offensive comments against someone else

Contructive criticism is fine and I have spent many hours last week replying to people - even though I may not agree with the position they are taking

You have also been told that there is no intention to 'hijack' a particular day and my understanding is that this event may now be starting on another date"

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Wildcat replies:
I have never written anything about "hijacking" a particular day (severe ME awareness day) anywhere. So you could not possibly have "told" me on any previous occasion, Charles. Are you perhaps mixing me up with someone else?

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I read the posts (on the MEA Facebook) as they appeared on the page, though did not post on those threads myself, and it is the case that a number of critical but totally civil posts were removed by the MEA Mod. .


I could equally say, Charles, that "you have been told on several occasions that the MEA has alienated numerous ME patients wth your choice of fundraising activities you think are acceptable (for an ME charity)".


.But I don't use that particular phrase ("you have been told") as it sounds rather high handed.
And I don't want this conversation to go on for ever.
.

.

 

[charles shepherd]

@charles shepherd just wrote to me (Wildcat):

"You have now been told on several occasions that if you go to the MEA Facebook page you will see that there are plenty of posts that do not agree that a charity should be accepting donations from a fundraising event that involves physical activity

The only posts that have been removed are a few that involve abusive of offensive comments against someone else

Contructive criticism is fine and I have spent many hours last week replying to people - even though I may not agree with the position they are taking

You have also been told that there is no intention to 'hijack' a particular day and my understanding is that this event may now be starting on another date"

~~~~~~~~~~~



Wildcat replies:
I have never written anything about "hijacking" a particular day (severe ME awareness day) anywhere. So you could not possibly have "told" me on any previous occasion, Charles. Are you perhaps mixing me up with someone else?

.
I read the posts (on the MEA Facebook) as they appeared on the page, though did not post on those threads myself, and it is the case that a number of critical but totally civil posts were removed by the MEA Mod. .


I could equally say, Charles, that "you have been told on several occasions that the MEA has alienated numerous ME patients wth your choice of fundraising activities you think are acceptable (for an ME charity)".


.But I don't use that particular phrase ("you have been told") as it sounds rather high handed.
And I don't want this conversation to go on for ever.
.

.

Apologies re first para.

In haste I was mixing you up with someone who keeps complaining that we are trying to hijack an awareness day

 

[Wildcat]

.
Apology accepted.

But really, if the 900 mile walk is going to be publicised around or on Severe ME awareness day, I can see that will be a problem and that patients would be more than concerned, understandably.
.

 

[jimells]

As you should already know, this is a 'walk' that is being taken very slowly - over several months

Unfortunately, the average news reader will pay at most half-attention to the article. They will miss those critical details. And we already know that Joe Average thinks everyone on the dole is a malingerer trying to grab what little money Joe still has.

Strenuous fundraisers may help your charity, but they won't do much for us patients and the attitudes we have to deal with...

 

[charles shepherd]

Unfortunately, the average news reader will pay at most half-attention to the article. They will miss those critical details. And we already know that Joe Average thinks everyone on the dole is a malingerer trying to grab what little money Joe still has.

Strenuous fundraisers may help your charity, but they won't do much for us patients and the attitudes we have to deal with...

Reply:

You make a valid point

However, if people with ME/CFS want to see 'human interest' stories about people with ME/CFS where they also have an opportunity to try and exert some control over what is being written about this illness they have to appreciate that the media aren't normally interested in fundraising stories about people who are doing passive fundraising events

If you follow the way the media covers these stories, they want to use stories about people who have recovered/improved and then gone onto do something newsworthy

Typical example from today's Daily Mail:
http://www.dailymail.co.uk/news/art...s-ballet-exam-told-doctors-wouldn-t-walk.html

It would be far better if we could persuade the media to cover severe ME as a separate issue -

This does occassionally happen: http://www.meassociation.org.uk/201...s-shown-on-bbc-news-south-east-5-august-2014/
but it is a real uphill struggle trying to get the media interested in the problems faced by people who severely affected by ME/CFS. The same situation sadly applies to some sections of the the medical profession…..

So we take the view that if people who have improved and want to do something that is physical and newsworthy, they have been medically assessed as being fit to do so, and they are willing to talk to the media about issues such as problems with DWP benefits, lack of NHS referral facilities for severe ME, the NICE guideline and lack of funding for biomedical research etc - then we will help them to do so

It's not just about fundraising.....

 

[Gingergrrl]

If you follow the way the media covers these stories, they want to use stories about people who have recovered/improved and then gone onto do something newsworthy

I totally disagree if what is being presented re: recovery is harmful and disingenuous. I don't want to see a fundraiser for lung cancer where the former victims are now doing a smoking contest. And I don't want to see a fundraiser for ALS saying that 50% of the people are cured when as of now, there is no cure. ALS raised millions of dollars with the ice bucket challenge which was both brilliant and HONEST. I think we can do the same for ME/CFS. We as sufferers deserve better. I am trying to stay out of this thread as I am not in the UK but am so appalled by what I am hearing it is hard not to add my voice.

ETA: Also if someone did recover, isn't that in and of itself newsworthy? Why do they have to risk their recovery to prove it?

 

[Esther12]

I totally disagree if what is being presented re: recovery is harmful and disingenuous. I don't want to see a fundraiser for lung cancer where the former victims are now doing a smoking contest. And I don't want to see a fundraiser for ALS saying that 50% of the people are cured when as of now, there is no cure. ALS raised millions of dollars with the ice bucket challenge which was both brilliant and HONEST. I think we can do the same for ME/CFS. We as sufferers deserve better. I am trying to stay out of this thread as I am not in the UK but am so appalled by what I am hearing it is hard not to add my voice.

ETA: Also if someone did recover, isn't that in and of itself newsworthy? Why do they have to risk their recovery to prove it?

I think that this just shows how much harm is done by the BS claims about recovery we often get from doctors, certainly from PACE, and so on. It is nasty and manipulative stuff the leaves patients deeply wary of any claim of recovery.

But at the same time, given the nature of ME/CFS as a diagnosis, it is likely that there are people with that diagnosis who will go on to recover (even if this seems to be sadly rare), and I think it's important that they don't get caught up in the legitimate anger people feel about false claims of recovery. There is a likelihood that the majority of these people will have had a less serious problem than that faced by many other patients, but that's just their good luck. So long as they're not doing some unreasonable "I've done so you can do" spiel (especially if it's while trying to sell something) then good luck to them.

Also, for people who have recovered, it's not like we can say exercise is innately harmful in the way that smoking is. If I ever recover I've got all sorts of energetic and fun things I want to get up to. Maybe one day we'll be able to go hiking together Gingergrrl - we can raise by drinking champagne up some mountain somewhere!

 

[Min]

I have not named any individuals Charles, please do not put words in my mouth.

Reply

If you look at your original post you will see that you named Emily Wren and provided a link to the announcement that we made on the MEA website at the time of her half marathon - which I why I explained what we did in this particular case

I have not named Emily Wren or any other individual Charles, you appear to be confusing me with someone else. I ask you once again not to put words in my mouth.

I do not believe these individuals are aware of the harm they do to the public's perception of our neurological illness. It is the responsibility of the charity concerned not to accept funds raised in this way. We already have the repeated and deliberate misrepresentation of our illness by the Wessely school of psychiatry to contend with.

If the MEA are not intending the incredible feat of a 900 mile walk by 'M.E,' sufferers to start on severe awareness day, why have they upset so many severely affected sufferers by announcing that it would?

 

[MeSci]

Isn't it bad to let that mean we feel we should want to reject how some patients whose health has dramatically improved want to spend their time though?

I'm a bit torn on this, because I think that 'raising awareness' is a pretty poor thing to campaign for in any way. What's so great about just general 'awareness' that we must want more of it? At the moment, I want people to be as unaware as possible!

When it comes to raising money I'm supportive of people doing whatever they think is best.

How would you (or others) feel about someone doing something for charity that resulted in them dying?

I'm wondering where people think that the line needs to be drawn, if they do not see a problem with a person with ME/in remission raising charity funds through a feat of physical activity.

If the person died, would it not be something like accepting 'blood money'?

 

[charles shepherd]

I totally disagree if what is being presented re: recovery is harmful and disingenuous. I don't want to see a fundraiser for lung cancer where the former victims are now doing a smoking contest. And I don't want to see a fundraiser for ALS saying that 50% of the people are cured when as of now, there is no cure. ALS raised millions of dollars with the ice bucket challenge which was both brilliant and HONEST. I think we can do the same for ME/CFS. We as sufferers deserve better. I am trying to stay out of this thread as I am not in the UK but am so appalled by what I am hearing it is hard not to add my voice.

ETA: Also if someone did recover, isn't that in and of itself newsworthy? Why do they have to risk their recovery to prove it?

REply

I agree that it would be totally inappropriate for someone with lung cancer to do a smoking challenge. The ice bucket challenge caught on here in the UK as well and some people did it for ME/CFS. The vast majority were healthy friends and relatives (Including my daughter) but there were a few people with ME/CFS who had a go - which was not sensible. Like most charities we do have to turn down fundraising proposals that are likely to be dangerous/harmful or inappropriate (not many) but it's also with noting that most people who do small scale fundraising initiatives for charity just go off an do it without involving or informing the charity concerned. Their name gets used, whether they approve what it is happening or not, and the donation is then sent in. Fact of life…..

 

[MeSci]

So we take the view that if people who have improved and want to do something that is physical and newsworthy, they have been medically assessed as being fit to do so, and they are willing to talk to the media about issues such as problems with DWP benefits, lack of NHS referral facilities for severe ME, the NICE guideline and lack of funding for biomedical research etc - then we will help them to do so

It's not just about fundraising.....

I think that you should at least ensure that you try to keep in touch with such fundraisers for, say, 2 years after the event to ensure that they have not been harmed by the activity.

If you find that they have, then you should publicly announce that you are no longer accepting funds from such challenges, and state the reason.

Maybe you need to start trying to follow people up now - including those who have raised funds in this way in the past. Just "How are you now?" or "Are you OK?" would be better than nothing.

 

[charles shepherd]

How would you (or others) feel about someone doing something for charity that resulted in them dying?

I'm wondering where people think that the line needs to be drawn, if they do not see a problem with a person with ME/in remission raising charity funds through a feat of physical activity.

If the person died, would it not be something like accepting 'blood money'?

Reply

I agree - which is why we would not want to support or endorse anyone with ME/CFS who is doing a physical challenge that was against medical advice

But life does have risks and if you follow this through one example that quickly comes to mind is should we be saying that everyone who has significant cognitive dysfunction with ME/CFS should not be driving a car - because this not only risks their own life but other people too?

 

[daisybell]

Reply

I agree - which is why we would not want to support or endorse anyone with ME/CFS who is doing a physical challenge that was against medical advice

But life does have risks and if you follow this through one example that quickly comes to mind is should we be saying that everyone who has significant cognitive dysfunction with ME/CFS should not be driving a car - because this not only risks their own life but other people too?

Anyone with cognitive dysfunction who is not safe to drive should not be driving, whatever their diagnosis. But just because someone has cognitive dysfunction does not automatically mean that they are unsafe to drive....

 

[MeSci]

Reply

I agree - which is why we would not want to support or endorse anyone with ME/CFS who is doing a physical challenge that was against medical advice

But in view of doctors' ignorance about ME, can that advice be relied on? Or is it given by a really ME-aware specialist?

But life does have risks and if you follow this through one example that quickly comes to mind is should we be saying that everyone who has significant cognitive dysfunction with ME/CFS should not be driving a car - because this not only risks their own life but other people too?

Logically I think one would have to say yes. After all, people with certain other medical conditions are not allowed to drive. I suspect that the reason that ME is not one such is that it is still not regarded as a 'real' illness.

I myself have been considering getting a car or similar again, after years of not being able to afford to run one (and still can't really) but I have considered my physical and cognitive problems as well and feel that it may be unwise. Even what appeared at first to be a 'good day' might turn into a bad one when I am a long way from home - so how would I get back safely?

So unless I recover significantly from how I am now, I don't think I will be driving. And I am only moderately affected.

 

[lansbergen]

I agree

I think that you should at least ensure that you try to keep in touch with such fundraisers for, say, 2 years after the event to ensure that they have not been harmed by the activity.

If you find that they have, then you should publicly announce that you are no longer accepting funds from such challenges, and state the reason.

Maybe you need to start trying to follow people up now - including those who have raised funds in this way in the past. Just "How are you now?" or "Are you OK?" would be better than nothing.

 

[Min]

I agree - which is why we would not want to support or endorse anyone with ME/CFS who is doing a physical challenge that was against medical advice

Taking medical advice on M.E. in the UK is just a sick joke when doctors know so little about our neurological illness that former mild or moderately affected patients in the 25% group still report being made severely disabled by ill-founded medical advice concerning exercise.

 

[Snow Leopard]

I think in the case of where still-ill ME patients are attempting serious feats, there needs to be a disclaimer when reporting such attempts.

 

[charles shepherd]

I think that you should at least ensure that you try to keep in touch with such fundraisers for, say, 2 years after the event to ensure that they have not been harmed by the activity.

If you find that they have, then you should publicly announce that you are no longer accepting funds from such challenges, and state the reason.

Maybe you need to start trying to follow people up now - including those who have raised funds in this way in the past. Just "How are you now?" or "Are you OK?" would be better than nothing.

Reply:

If you are a member of the MEA you will know that we publish a huge list of people in each issue of the magazine with a list of their donations - partly as a way of saying thank you. For a small charity with a part time fundraiser i don't think routine follow up of the health of our fundraisers could become a high priority item. We do keep in touch with our fundraisers and encourage them to let us know if there is anything they want to raise with us. And we have not had a single report from anyone doing a physical challenge for the MEA during the past 20 years reporting that their health has relapsed as a result of doing so.