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

[Wildcat]

.
@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”


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





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.”….


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




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!!



~~~~~~~~~~~~~~~~~~~~~~~~~~~



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?”


.

 

[Sleepyblondie]

i Have only read the first couple of posts in this thread, but?

I think there is this sort of believe amongst healthy people that those that get sick with any condition, its because they have an unhealthy lifestyle, so by being healthy like eating better, exercising and taking a vitamin will help people recover.

There definitely are people who get ill from a poor lifestyle but that is one but many risk factors in poor health. Healthy people forget genetics and just dam bad luck.

Many are shocked when they hear of someone who is super fit gets cancer or has a heart attack and this is seen as just bad luck. Its not just the super fit that have bad luck when they become ill which is what many forget. There are many people with average health that also get dam bad luck.

I think those that get ME isnt because of poor life style but its because of dam bad luck from getting the wrong genetics, to being in the wrong place at the wrong time and getting sick from someone etc.

We need to say that those with ME have bad luck with health, we need to ditch the whole poor life style causes or under alot of stress crap as it just gives the psychobabblers something to aim their magic at.

 

[Sleepyblondie]

Yes. I was fit. I exercised a lot and took care of my body. I had a good career.
Now people patronise me and tell me how important exercise is. I only manage to get out about once a month, and that once a month is often spoiled by some well intentioned, but ignorant person telling me how to get better.

 

[lansbergen]

Now people patronise me and tell me how important exercise is.

I do not need to excercise to improve. Futhermore my belly is still skrinking without exercise and/or dieet and I can use the muscles better and better.

My belly looked as if I was nine month pregnant with twins. The wall was hard and now is much more smooth.

 

[MeSci]

Yes. I was fit. I exercised a lot and took care of my body. I had a good career.
Now people patronise me and tell me how important exercise is. I only manage to get out about once a month, and that once a month is often spoiled by some well intentioned, but ignorant person telling me how to get better.

Hi, @Sleepyblondie - do you need some help replying to messages? It looks to me as though you are quoting messages without adding any text of your own underneath, but putting your text in a later message, which makes it very hard to know what you are replying to.

The easiest thing is to click 'Reply' on the bottom right below the message you are replying to, type your reply below it, and then click 'Post Reply'.

EDIT - in case that isn't clear, you need to type your message under the one you are quoting in the new window that you get after clicking 'Reply'. Make sure you type your message after the word 'QUOTE' that appears in capitals and square brackets at the end of the quoted message.

If you're replying to a long message, you might want to cut out the text that isn't relevant to your reply, but maybe you need to just get used to the straightforward 'reply' method first?

 

[jimells]

Wow, all these different organizations with almost the same name - how does one tell the players without a scorecard?

And this is even more difficult for the public who are besieged by endless pleas for donations from an endless parade of donation seekers...

 

[Snowdrop]

Sadly this is not how the media portray such individuals. It always seems to be stated that they are ME sufferers. It is really NEVER made clear that the individual is fully recovered.

And if the media get it wrong (which they do) then it harms us all. In fairness to the media however, I should say that even MEA can release info on these fundraisers with out making it totaly clear that the individual has totally recovered!

Yes. I think that this statement speaks to the heart of what is bothering many very sick ME sufferers and needs to be addressed.
We are up against so much media bias, much of it originating from the UK.

One can argue that people can know better and understand what ME really is about despite wrong perceptions.
I don't see that as a reasonable position to hold. It's hurtful. It hurts the many people who have families that will once again only see the 'headline'.

My family believe me when I say I'm ill but they are also people with limited time, my sisters work very hard at tiring blue collar jobs and they have families of their own and friends and not a lot of time to parse the nuances of this illness. Even after years of understanding I can get a comment out of the blue that reflects whatever latest rubbish is being said about the illness. In other words their understanding is tenuous and easily swayed by what they read.

I would even hazard to say that it's more complicated than that. They both believe me and what I say regarding being ill and they are at the same time pulled by the belief that if I just make certain efforts I will be well again. It's simply a function of their hope for me. It may be contradictory but that's how thinking and emotion work sometimes.

For people who are not just marginalised by ME but by poverty or other adverse circumstances this attitude is less easy to accept with equanimity. Some people are dealing on several fronts with prejudice and unfairness. This is part of the illness for some.
And it's a different experience in quality to someone who has some financial security, people who are able to take care of you and take the time to understand the science.

I admit (and it's not hyperbole) I am completely mystified as to why the idea that extreme physical challenge as a way to raise funds for ME is at all contentious. That is to say, I'm baffled as to why anybody would find this at all appropriate. It might be the usual way of doing this sort of thing. It always grabs peoples attention when people do things that show they will 'overcome'.

Canada has it's own such superstars: Rick Hansen-Canadian wheelchair paralympian and Terry Fox who ran across country on a prosthetic leg to raise funds for cancer. Neither of them had an illness that suffers under so much misinformation around the issue of exercise.

Every day ordinary people are bombarded in all aspects of media about healthy lifestyle. Eat right, exercise daily. This is recommended to maintain health. This also becomes part of the publics general perception of how to treat illness.

My concern on this issue is for the severely ill--some of whom likely cannot speak up much for themselves. I know my thinking with regards to being sick with this illness has evolved over time as I have become increasingly sick. I'm not in the UK so it's not particularly relevant but I don't feel this sort of fundraising effort represents my situation as someone affected by this illness.
I think it has a negative impact on the perception of the suffering of those severely affected.

 

[Keela Too]

The case of those with missing limbs or other debilities performing amazing feats is often brought up.

However, they are not risking the loss of another limb by the act of taking on their challenge.
(Well okay, an unusual accident may occur, but that is the same for the healthy.)

The point about exertion based challenges, for ME patients is that EXERTION is the very thing that causes us harm.

And to be honest every ME patient, recovered or not, potentially risks harm if they push themselves.

As I understand it, ME can go into remission, but is known to relapse if the individual does not continue to pace appropriately.

 

[charles shepherd]

.
@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”


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





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.”….


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




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!!



~~~~~~~~~~~~~~~~~~~~~~~~~~~



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?”


Reply:

We are occasionally (and it is very occasionally) approached by someone who has made a significant degree of recovery from ME/CFS and is regularly taking part in an activity such as gentle running or swimming that they are are now capable of doing

Fortunately, there are people who recover from this disease and part of this recovery process will inevitably include increasing the amount of physical activity that they are able to undertake

Where someone who has made a significant degree of recovery from ME/CFS decides they want to do a physical challenge such as this and involve the MEA, the medical aspects of doing so are always discussed with them

Emily felt she was sufficiently well to be able to do this event

She succeeded and the whole story is told below - along with the public reaction at the time on the MEA website

We would not encourage or endorse someone to take part in a physical challenge if it was likely to put their health at risk and I have intervened in cases where this is so to say that this would not be a sensible or appropriate thing to do

The role of an ME/CFS charity is to not only highlight the problems faced by people at the severe end of the spectrum but also to give hope to people that improvement and even recovery from ME/CFS is possible - even after a considerable period of time of being ill





From bag of nerves to half marathon runner… 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 in the mighty Madjeski Stadium. And she’s been back at work this week. Emily has been telling her story in a very frank blog at http://runningforme2011.wordpress.com/– from which this item is taken.

I’ve never been so nervous in my whole life. As the day slowly approached, each morning i’d wake up with the feeling of butterflies in my stomach. And not just because the thought of running that far scared me – but because of the fear of repercussions afterwards with my health.

So by Sunday, I was emotionally drained. Arriving at the start line with 12,000 other people, I began to question whether I really should be doing this. A couple standing next to me asked what ME was, and all I could manage was a mixed up sentence that made me sound like a rather hyperactive 13-year-old.

15 minutes later and it was too late to back out and there I was, crossing the start line, trying my best to blank out the thoughts that I was never going to complete 13 miles (my best so far has been 8).

As we headed off round the outskirts of Reading, I was genuinely surprised and impressed by the amount of people who had made the effort to come out and cheer us all on. The clapping, shouting and cheering really lifted mine, and other runner’s spirits and kept us going.

It got to about 2 miles into the race when a woman gently touched my arm. I turned my head round, initially in shock, after being scared out of my ‘running daze’. She was smiling, and as she ran past she said

“What you are doing is really great, my daughter has ME….”

before she carried on running ahead of me. I could have cried. In fact, the tears began forming and I had to fight them off. Now wasn’t the time to start bawling my eyes out half way through a housing estate in Reading with hundreds of people surrounding me.

But she gave me a push – metaphorically speaking, that carried me for at least another 4 miles, before my body started screaming at me.

Mile 6 was a milestone in more ways than one. It was the half way point, which should help me mentally, and it was also the point where i’d be running through the town surrounded by supporters, and crucially, my parents, who I normally watch the race with every single year, in almost the identical spot.

But I couldn’t run anymore. I’d stuck to my run/walk strategy, but my asthma was kicking in. My lungs were struggling for air, and I had to stop. I slowly walked into the town, attempted to catch my breath and thanks to a helpful bystander was able to – and pushed on into town.

Seeing my parents brought on the raw emotion again. My eyes were welling up, I could see them, looking so proud…I had to carry on, even if it meant walking. I stopped to give my mother a hug, she’s been through it all with me and then some…and she looked me straight in the eye and said “You don’t have to carry on if you can’t go any further, we’re all so proud of you”.

This gave me the energy and push I really needed, and I slowly carried on. Miles 7 & 8 soon arrived to my relief, and I started feeling better again. The hills approaching the outskirts of town were agony, the only thing I could do was slowly walk up them, before gently jogging to the next milestone.

And yet the crowd was relentless. Round every corner, a big group of people, shouting and cheering, I found energy I didn’t even know I had thanks to the act of kindness from complete strangers. Bands were playing, children jumping up and down, it was magical.

The final two miles were brutal – running/walking up a dead straight road leading to the finishing line, which is inside the fabulous Madjeski Stadium (home of mighty Reading (Royals) Football team).

As I walked/jogged the final slope up to the stadium I could hear the crowds, thousands of them sat in the stadium, waiting for their friend/family/colleague to make it back in one piece and cross over the finishing line.

I entered the stadium from the side and the crowd literally carried me to the line. I had no energy to run, yet I managed a sprint, before collapsing on the other side of the finishing line, with a giant grin on my face.

Then the tears started again, everything i’d accomplished, all the people who’ve supported me on the way, it all became a bit too much.

I wiped away the tears and made my way out to collect my medal, quite possibly one of the proudest moments of my life.

When I first started thinking about running the Reading Half Marathon, and blogging about my experiences, I never in a million years thought I’d travel on such an amazing journey.

It all culminated in an exciting and emotionally charged run on the 20th March 2011, which i’m glad to say I completed in the time of 2hrs, 49 minutes.

I can now officially say I ran the Reading Half Marathon (all 21.5km/13 miles of it!)

Thank you to everyone who’s supported me, you will honestly never understand what the support has meant to me and what it has enabled me to achieve. For that, i’m forever grateful.

To all the ME sufferers (and it’s variants) you inspire me. Without you, I wouldn’t have been able to complete my ambitious target. You kept me going through the darker points in all of the runs, making me realise how lucky I am.

And to all the people who have read my blog and tweets and are now more aware of ME, and how it can debilitate people and devastate lives… thank you.

If you would like to donate to my chosen charity – the ME Association, please visit my justgiving page at

www.justgiving.com/runningforme

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2 thoughts on “From bag of nerves to half marathon runner… Emily does it all for the ME Association”

1. DanielleMarch 24, 2011 at 2:16 pm
   Emily, reading this has really moved me. You should be so utterly proud of yourself. If I had the money to sponser you post race, even though I already did pre race, I would do it over. It’s fantastic what you have done. Thank you for achieving something that I would love too, but am sure I never will. xxx
   
   Log in to Reply
2. SunnyMarch 25, 2011 at 5:14 pm
   Thank you so much Emily.
   
   Reading this made me feel very emotional. I dream of being able to run. Not that I was hugely into Athletics before I became ill, but I certainly liked sport. I dream of being able to go for a run, I feel so envious of those who can and do. I know it makes you feel so great.
   
   Well done for finishing. It sounded like it was incredibly hard for you.
   
   I hope one day we will have the answers to why some recover, why some are mildly affected, and why others like yourself can still achieve great things like this. we won’t have this answers until there is some science so hopefully the money you slogged so hard to raise will go towards this kind of research.
   
   Whoever your critics are and what ever you did or didn’t have, you have raised awareness for a very disabling misunderstood disease and I thank you for that, from the bottom of my heart.
   
   Thank you for for keeping your spirit and not letting people get you down.
   
   I do hope you have plenty of rest and nurture yourself after this ordeal. It sounds like you can have nasty symptoms still.
   
   Maybe someone will treat you to a spa!?
   
   Best wishes x
   
   

 

[lansbergen]

Why raise money with exercise things? Can they not think up something less exhausting

 

[MeSci]

@charles shepherd - do you know how Emily is now? Her blog seems to stop at March 2012.

 

[Wildcat]

.
@charles shepherd and All

As always, there was a lot of grief caused by that person (Emily Wren) running a (half) marathon for the MEA whilst claiming they are recovering from ME (or CFS). If I remember, numerous patients were very concerned that the MEA were accepting funds raised in this way, and let the MEA know .

Numerous ME patients did not appreciate the display of stamina in the name of ME fundraising by someone who said they were still sick. And as usual, the MEA put those patients in the wrong and were very rude about them.

Emily Wren also wrote that if she did not do her physical training for three days on the go, she became depressed.

Thats hardly typical of ME, is it?


Surely you can see that with the 44% misdiagnosis rate found by Julia Newton's team, that its never clear if the people doing the physical endurance activities have ME in the first place, especially if they recover in under two years (though its obviously not the people's fault if they have been misdiagnosed).

.
It looks like the MEA will continue to accept funds from physical exertion activities by people who are ill, and will continue to alienate more ME sufferers, who will continue to be put off joining the MEA charity.



The absolute last word was the woman who has two jobs, three children to look after, does paddle boarding five days a week, goes to the gym three times a week, set a world record recently in paddle boarding around the Isle of Sheppey, and says she has ME.

We've also had 'person with ME' swimming the straits of Gibralter, and swimming from mainland England to the Scilly Isles.

Oh and the high altitude Inca walk from Cuzco to Machu Picchu!

It'll be "person with ME climbs Everest" next!




.

 

[charles shepherd]

Why raise money with exercise things? Can they not think up something less exhausting

It is very popular, certainly here in the UK, to raise money for medical charities by doing some sort of physical challenge - walks, runs, swimming, skydives. This list goes on. We have people raising money for the MEA doing both passive and active events. I think that when someone with ME/CFS has made a degree of recovery/improvement, and they are now able to do something physical like a fundraising walk, then they see this as a good way of supporting a charity they want to thank. I also think it's a lot easier to bring in donations by doing some sort of physical challenge.

 

[charles shepherd]

@charles shepherd - do you know how Emily is now? Her blog seems to stop at March 2012.

I am no longer in touch with Emily but will try to find out

 

[charles shepherd]

.
@charles shepherd and All

As always, there was a lot of grief caused by that person (Emily Wren) running a (half) marathon for the MEA whilst claiming they are recovering from ME (or CFS). If I remember, numerous patients were very concerned that the MEA were accepting funds raised in this way, and let the MEA know .

Numerous ME patients did not appreciate the display of stamina in the name of ME fundraising by someone who said they were still sick. And as usual, the MEA put those patients in the wrong and were very rude about them.

Emily Wren also wrote that if she did not do her physical training for three days on the go, she became depressed.

Thats hardly typical of ME, is it?


Surely you can see that with the 44% misdiagnosis rate found by Julia Newton's team, that its never clear if the people doing the physical endurance activities have ME in the first place, especially if they recover in under two years (though its obviously not the people's fault if they have been misdiagnosed).

.

By all means make constructive criticisms but do not spoil your case by claiming that we were 'very rude' to people who were critical of what Emily was doing

If my recall is correct we did, as usual, have to remove some comments from people that were offensive towards Emily and what she was doing

 

[Min]

The problem is that people with post viral fatigue, mild depression etc etc are being misdiagnosed under the 'CFS' umbrella term, and believe they have the neurological illness myalgic encephalomyelitis.

Severe myalgic encephalomyelitis awareness day is NOT the right time for yet another of MEA's many fundraising events by another 'M.E.' sufferer undertaking feats of physical endurance that would challenge a fit and healthy person.

There is absolutely no excuse for hijacking the day and its media attention with such a feat, and then accusing anyone who dares to voice concern of rudeness and aggression.

.
@charles shepherd and All

As always, there was a lot of grief caused by that person (Emily Wren) running a (half) marathon for the MEA whilst claiming they are recovering from ME (or CFS). If I remember, numerous patients were very concerned that the MEA were accepting funds raised in this way, and let the MEA know .

Numerous ME patients did not appreciate the display of stamina in the name of ME fundraising by someone who said they were still sick. And as usual, the MEA put those patients in the wrong and were very rude about them.

Emily Wren also wrote that if she did not do her physical training for three days on the go, she became depressed.

Thats hardly typical of ME, is it?


Surely you can see that with the 44% misdiagnosis rate found by Julia Newton's team, that its never clear if the people doing the physical endurance activities have ME in the first place, especially if they recover in under two years (though its obviously not the people's fault if they have been misdiagnosed).

.
It looks like the MEA will continue to accept funds from physical exertion activities by people who are ill, and will continue to alienate more ME sufferers, who will continue to be put off joining the MEA charity.



The absolute last word was the woman who has two jobs, three children to look after, does paddle boarding five days a week, goes to the gym three times a week, set a world record recently in paddle boarding around the Isle of Sheppey, and says she has ME.

We've also had 'person with ME' swimming the straits of Gibralter, and swimming from mainland England to the Scilly Isles.

Oh and the high altitude Inca walk from Cuzco to Machu Picchu!

It'll be 'person with ME climbs Everest' next!




.

 

[Wildcat]

.
.As I recall, patients were dismayed to have their reasonable objections deleted and disparaged by the MEA, again.
.

 

[Gingergrrl]

Wow, all these different organizations with almost the same name - how does one tell the players without a scorecard?

And this is even more difficult for the public who are besieged by endless pleas for donations from an endless parade of donation seekers...

@jimells All of these UK charities (at least they seem to be in the UK, please correct me if I am wrong) are bringing great harm to the cause of ME/CFS. The idea of having people run a marathon to raise awareness for ME is so ludicrous that I am beyond words.

I said in another post that it was like having a cake eating contest to raise awareness for diabetes and having a bunch of people with diabetes eat as much sugar and cake as humanly possible in one day and not check their blood sugar or take meds and if they ended up dying from it, so be it, because they raised some funds.

Exertion and exercise are the very thing that harms people with true ME/CFS and this has been proven by the two day CPET test by the Workwell foundation. I am not well enough to walk more than five minutes without total weakness, chest pain, and extreme shortness of breath. If I ever do get better, I will never risk my health by attempting something strenuous b/c any recovery is so fragile. If I get to the point that I can lift a plate out of the cupboard on my own, it will be a real accomplishment.

The reason that I am quoting @jimells here is that he asked how do we know who are the legitimate charities to donate to-- the ones with hardcore scientists who are working day and night to solve the biological/medical illness of ME/CFS without causing any harm to it's sufferers (either by endangering them to do physical tasks or creating more public stigma?)

Then please donate to the End ME/CFS Project of the Open Medicine Foundation and you can have no doubt that your donation is going to legitimate biomedical research.

 

[Esther12]

I think that charities should leave it to individuals themselves to decide what they want to do. It shouldn't be that charities are encouraging patients to do activities that they are wary of, but if someone wants to do this sort of thing for themselves, then I don't think it would be right for a charity to say 'We disapprove of your decision and will not accept your donation'.

I think it's important to focus on trying to treat individuals fairly rather than getting too caught up in how these sorts of things might be used to criticise CFS patients as a group. I can see why some people will be concerned that this sort of thing will lead to them personally being unfairly criticised, but really, we've got bigger things to worry about. Also - these sorts of things might challenge some of the stereotypes around CFS. We can be attacked for so many different and often contradictory things that it's difficult to know how others will react.

 

[Min]

@jimells All of these UK charities (at least they seem to be in the UK, please correct me if I am wrong) are bringing great harm to the cause of ME/CFS. The idea of having people run a marathon to raise awareness for ME is so ludicrous that I am beyond words.

I said in another post that it was like having a cake eating contest to raise awareness for diabetes and having a bunch of people with diabetes eat as much sugar and cake as humanly possible in one day and not check their blood sugar or take meds and if they ended up dying from it, so be it, because they raised some funds.

Exertion and exercise are the very thing that harms people with true ME/CFS and this has been proven by the two day CPET test by the Workwell foundation. I am not well enough to walk more than five minutes without total weakness, chest pain, and extreme shortness of breath. If I ever do get better, I will never risk my health by attempting something strenuous b/c any recovery is so fragile. If I get to the point that I can lift a plate out of the cupboard on my own, it will be a real accomplishment.

The reason that I am quoting @jimells here is that he asked how do we know who are the legitimate charities to donate to-- the ones with hardcore scientists who are working day and night to solve the biological/medical illness of ME/CFS without causing any harm to it's sufferers (either by endangering them to do physical tasks or creating more public stigma?)

Then please donate to the End ME/CFS Project of the Open Medicine Foundation and you can have no doubt that your donation is going to legitimate biomedical research.

.
In the UK, the charity Invest in ME funds only biomedical research, refuses to work with the Wessely school of psychiatry, and refuses to take donations from fundraising by people claiming to have M.E. yet undertaking strenuous physical tasks.