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

[Min]

I hope you will share your thoughts on ME Ass page

Comments on the MEA's facebook page expressing concerns over misrepresenting our illness in severe awareness week are being swiftly removed




https://m.facebook.com/permalink.ph...tal_comments=73&ref=notif&notif_t=share_reply

 

[Wildcat]

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There is currently yet another person (who says they have been ill with ME for a year) doing an endurance/fitness challenge to raise funds for the MEA, by doing the 'Zombie Evacuation Race'.


'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!!


Only the fittest will survive!!! '

http://zombieevacuation.com/


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



The ME Association has a long history of taking funds raised by people who say they have ME and do extreme physical stamina/endurance challenges whilst claiming to be 'raising awareness' about how serious and debilitating ME is. Marathons, the 'Toughmudder' 12 mile obstacle course, demanding tough hill walking routes .... physical challenges that are beyond the abilities of many healthy people.


Every time, the people doing the extreme physical challenges claim that they are ‘raising awareness’ about how serious and debilitating ME is, apparently oblivious to how many ME sufferers are estranged from their families and former friends due to family and friends believing that the ill person should make more effort, and exercise more to get well.


Each time, ME patients, including MEA charity members, tell the MEA that they are horrified at how public perception of ME is further damaged by publicity for the displays of physical exertion and endurance entailed in doing these extreme challenges for fundraising.



Publicity is sought for such exploits, and the people doing them say such damaging things as Yes they have ME but they don't let it hold them back....


The MEA loses members because of it, potential members are put off, and endless patients are distressed by the possibility of their friends and relations, doctors, DWP assessors, reading about ME sufferers doing such demanding physical challenges, leading to perceptions that ME sufferers just need to make more effort and exercise etc.



At this point in time British ME patients are being hit exceptionally hard by the notorious new and harsh sickness benefits assessments for ESA (Employment and Support Allowance) and PIP (extra money for mobility and care needs). Real hardship and additional suffering is being created by these unjust assessments, and the assessors inability to properly assess ME. The last thing that is needed is people who have been given a 'CFS' diagnosis based on broad and vague criteria getting publicity for doing physical challenges. It causes far more harm than good.


The MEA obdurately defends the rights of the marathon runners/hill walkers/ etc, and always dismisses the concerns about the damaging publicity. The MEA are currently deleting from its Facebook page posts by patients who are appalled by those particular fundraising activities. Its difficult to see why the MEA, being a small charity, would continue to alienate ME sufferers, potential charity members, in this way.

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[Min]

.

There is currently yet another person (who says they have been ill with ME for a year) doing an endurance/fitness challenge to raise funds for the MEA, by doing the 'Zombie Evacuation Race'.


'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!!


Only the fittest will survive!!! '

http://zombieevacuation.com/


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



The ME Association has a long history of taking funds raised by people who say they have ME and do extreme physical stamina/endurance challenges whilst claiming to be 'raising awareness' about how serious and debilitating ME is. Marathons, the 'Toughmudder' 12 mile obstacle course, demanding tough hill walking routes .... physical challenges that are beyond the abilities of many healthy people.


Every time, the people doing the extreme physical challenges claim that they are ‘raising awareness’ about how serious and debilitating ME is, apparently oblivious to how many ME sufferers are estranged from their families and former friends due to family and friends believing that the ill person should make more effort, and exercise more to get well.


Each time, ME patients, including MEA charity members, tell the MEA that they are horrified at how public perception of ME is further damaged by publicity for the displays of physical exertion and endurance entailed in doing these extreme challenges for fundraising.



Publicity is sought for such exploits, and the people doing them say such damaging things as Yes they have ME but they don't let it hold them back....


The MEA loses members because of it, potential members are put off, and endless patients are distressed by the possibility of their friends and relations, doctors, DWP assessors, reading about ME sufferers doing such demanding physical challenges, leading to perceptions that ME sufferers just need to make more effort and exercise etc.



At this point in time British ME patients are being hit exceptionally hard by the notorious new and harsh sickness benefits assessments for ESA (Employment and Support Allowance) and PIP (extra money for mobility and care needs). Real hardship and additional suffering is being created by these unjust assessments, and the assessors inability to properly assess ME. The last thing that is needed is people who have been given a 'CFS' diagnosis based on broad and vague criteria getting publicity for doing physical challenges. It causes far more harm than good.


The MEA obdurately defends the rights of the marathon runners/hill walkers/ etc, and always dismisses the concerns about the harmful publicity, and are currently deleting from its Facebook page posts by patients who are appalled by those particular fundraising activities. Its difficult to see why the MEA, being a small charity, would continue to alienate ME sufferers, potential charity members, in this way.

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Also, a number of 25% group members are currently complaining of abuse from nursing home staff who do not believe they are really ill.

Publicity from these sort of MEA fundraising activities can only make their treatment worse.

 

[MeSci]

I used to be on the Action for M.E. forums, and there was a guy who turned up, claimed to have M.E., said he was on sickness benefits, yet was planning a charity fundraising trip (around Scotland, I think) by motorcycle, camping in a small tent overnight.

Many people wished him well and suggested places to fundraise. I challenged him, pointing out how damaging it would be if people found he was doing this while claiming sickness benefits, giving support to arguments that we were all really fit and well and just avoiding work so that we could have a lifelong holiday at the taxpayer's expense. I also questioned his diagnosis. I also asked whether he knew that exertion such as he described would likely cause collapse and worsening in someone with M.E.

I don't know if he ever did it.

 

[eafw]

a massive gap between the reality of the disease, and the perceived reality that everyone else thinks is representative of the disease based on all the misinformation

This is a big problem, that ME is one of those diseases that people have convinced themselves that they are experts on while actually being completely clueless about it. I'm not sure that we'll ever beat the propoganda that's constantly being churned out about the illness until we have properly defined subgroups, reliable diagnostics and hopefully some sort of treatment.

Even then it will probably take a big PR effort, lots of resources - something we don't have on our side at the moment either.

 

[eafw]

I'm trying to list some useful answers to recommendations of GET (or other useless/harmful 'cures' ...They may say that they know someone who has recovered with GET, or have read numerous stories of people recovering with GET.

I am way past the point of trying to reason with people, though perhaps something along the lines of

"Oh, no that was discredited years ago - really do people still believe that ? - dear me, that sounds ridiculous - haha, the things journos will come up with to sell papers" (best delivered in a very incredulous "how can you be so stupid" tone of voice")

 

[charles shepherd]

There is a very lively and useful discussion taking place on MEA Facebook about whether research funding charities such as The MEA should accept donations from people with ME/CFS who have improved, or may even have recovered, and are now well enough to do some form of physical activity such as a sponsored walk

The MEA has been hammered for accepting such donations by a small number of very vocal (and sometimes angry) correspondents - including some very familiar names

But it's worth noting that I am not aware of any research funding charity here in the UK that refuses to accept donations from people who are doing some form of physical or mental challenge. I am happy to be corrected on this.

There are a wide range of views being expressed - including plenty of well thought through points from people who do not believe that charities should be accepting donations from from people with ME/CFS who are undertaking a challenge that invoves some sort of physical activity

A very small number of posts have been removed because they are offensive or abusive in nature to other members of the group

The people concerned have been repeatedly warned about their unacceptable behaviour - but they do not take any notice

This sort of aggressive behaviour, where one person with ME/CFS attacks another person with ME/CFS in a very unpleasant way because they disagree with the view being expressed, or sends me an offensive email, is not unique to the MEA Facebook page - but we are not prepared to accept it

I suggest that people read the disussion of our Facebook page before coming to the inaccurate conclusion that the MEA is preventing debate on a perfectly valid subject
MEA Facebook: https://www.facebook.com/pages/ME-Association/171411469583186

Could I also point out that this is a walk that is being done over a considerable period of time - three months or more - and that the person involved will be doing so by walking AND using a mobility scooter. And it will not be done against medical advice.

I don't know what the percentage of each activity will be but I assume that this will be a very flexible arrangement.

It has also been explained to the critics that ME/CFS covers a wide range of severity and while the vast majority of people with ME/CFS would not be able to do this type of challenge, someone who has made a significant degree of improvement, or has recovered from ME/CFS, would be able to take on a more challenging physical task.

The person concerned has done several long distance walks before - so he clearly knows what he is doing.

 

[Wildcat]

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@charles shepherd and All

People can read the MEA FB thread that you have linked, but they will not be able to see the many posts that object to the physical exertion fundraising for the MEA, because the MEA Mods have deleted the most eloquent of those posts.

In fact it seems that certain MEA FB members have had several if not all of their posts deleted. So the MEA FB thread you linked to does not reflect the discussion that took place, and so is less than useful, as it is now one sided, having been censored


There was nothing offensive or abusive in the posts removed by the MEA mods; the posts were from ordinary ME sufferers expressing their great concern that the MEA is defending inappropriate fundraising activities, yet again.

The threads were read by a larger number of people than just those who posted on the threads. There was none of the "aggression" that you claim. But there were ordinary people with ME left very dismayed by the attitude and actions of the MEA in silencing objections on your FB page to the MEA supporting inappropriate fundraising activies.


There were two threads on the subject this week (on the MEA Facebook), in which the vast majority were not in favour of the MEA accepting funds raised in such a manner (until the MEA started deleting posts). Its not a small number of people who are very concerned about the physical exertion fundraising, not a "small group who don't like the MEA" as you keep stating, and its not the same people year after year.


Every time the MEA accepts the physical exertion/endurance fundraising activities by people with a CFS diagnosis, the MEA alienates large numbers of patients who think the MEA are giving out a wrong and very damaging message to the public. What is also offensive is the way the MEA then seeks to put the people who are upset by such activities in the wrong, as you have been doing on the FB page in the last week.


Dismissing genuine concerns as "angry and vocal" or "agggresive" is totally wrong. They were not "angry" or "aggressive". But I expect the patients whose posts were removed by the MEA mods, patients who are now being defamed by the MEA, are now pretty upset by the MEA attitude and actions.



The MEA is very polite and warm to the people doing the physical exertion fundraising, as you were on your Facebook to the person doing the outdoor rugged 'The Zombie Evacuation Race - ‘Only the fittest will survive’ http://zombieevacuation.com/


But the MEA is dismissive (and has been quite rude also) towards the sick people who are concerned (even distressed) about the damaging publicity from such exploits.
.

Why the MEA places the rights of a few individuals who want to prove themselves by doing extreme physical activities, above the needs of the majority of patients whose lives and health are further devastated by disbelief in their physical infirmity, is a continuing puzzle.

If the MEA wants the money that badly, why don't you drop the physical exertion fundraising by 'CFS' patients, and instead campaign for the adoption of the CCC/ICC in Britian (as in the '50 Experts letter to the US HHS)?


Your membership would increase substantially, with greater interest in raisng money for the MEA by means that do not give relentlessly damaging messages about ME to the public.



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[alex3619]

Whether such a fund raising activity has a negative or positive public relations impact depends hugely on the public relations effort that goes with it.

How this is handled can completely alter the impact on the public.

For example, if a lot of photos of an exhausted person, or one relying on a mobility scooter, were posted in various places, this would enable people to not get the wrong idea. A short video clip of a slow shuffle rather than a brisk athletic walk might also help. These need to be genuine photos or videos however or it will be subject to criticism that it was staged.

What concerns me mostly about public relations, in general, is that the number of negative stories and implications vastly outweighs the positive. People tend to believe in what they see the most unless they take the time to investigate.

I think the objection largely comes from the link to severe ME awareness. Its not so much that a milder patient can do this, but that it comes at a time when the intended message is about the severe end of the spectrum.

I have had times in my illness when I could walk very very long distances ... at a slow pace. At other times a marathon is walking a few meters to my electric jug.

A positive spin that I think can be pushed is not that ME patients can perform hard physical activity, but that despite our exhaustion and pain we can have determination - spun right this would directly counter arguements that we have fear of movement.

I still think exercise based challenges are not a great idea. Perseverance, as in surviving isolation and incapacity for long times, could be shown using my webcam or locked in a room examples. These would much more effectively demonstrate the illness.

There was an earlier point made that webcams could be challenged by the assertion that this was all staged, if I recall correctly. Now it would help if patients who did this did release their names. The main counter to this though is duration. Live webcams over months ... who is going to stage that?

PS Sometimes we can have increased energy, but this can also be used positively if presented right. Lately I have had more short term energy, maybe double what I had a few weeks ago, and this shows. My capacity is still rubbish, but that small improvement has greatly improved my mood, and it shows to people I am talking with. In fact it shows enough that in the back of my thoughts I am worrying people might jump to the conclusion that I am much better than I am. Appearances do affect how people think about things.

 

[charles shepherd]

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@charles shepherd and All
People can read the MEA FB thread that you have linked, but they will not be able to see the many posts that object to the physical exertion fundraising for the MEA, because the MEA Mods have deleted the most eloquent of those posts.

In fact it seems that certain MEA FB members have had several if not all of their posts deleted. So the MEA FB thread you linked to does not reflect the discussion that took place, and so is less than useful, as it is now one sided, having been censored


There was nothing offensive or abusive in the posts removed by the MEA mods; the posts were from ordinary ME sufferers expressing their great concern that the MEA is defending inappropriate fundraising activities, yet again.

The threads were read by a larger number of people than just those who posted on the threads. There was none of the "aggression" that you claim. But there were ordinary people with ME left very dismayed by the attitude and actions of the MEA in silencing objections on your FB page to the MEA supporting inappropriate fundraising activies.


There were two threads on the subject this week, in which the vast majority were not in favour of the MEA accepting funds raised in such a manner (until the MEA started deleting posts). Its not a small number of people who are very concerned about the physical exertion fundraising, not a "small group who don't like the MEA" as you keep stating, and its not the same people year after year.


Every time the MEA accepts the physical exertion/endurance fundraising activities by people with a CFS diagnosis, the MEA alienates large numbers of patients who think the MEA are giving out a wrong and very damaging message to the public. What is also offensive is the way the MEA then seeks to put the people who are upset by such activities in the wrong, as you have been doing on the FB page in the last week.


Dismissing genuine concerns as "angry and vocal" or "agggresive" is totally wrong. They were not "angry" or "aggressive". But I expect the patients whose posts were removed by the MEA mods, patients who are now being defamed by the MEA, are now pretty upset by the MEA attitude and actions.



The MEA is very polite and warm to the people doing the physical exertion fundraising, as you were to the person doing the 'The Zombie Evacuation Race - ‘Only the fittest will survive’

But the MEA is dismissive (and has been quite rude also) towards the sick people who are concerned (even distressed) about the damaging publicity from such exploits.
.

Why the MEA places the rights of a few individuals who want to prove themselves by doing extreme physical activities, above the needs of the majority of patients whose lives and health are further devastated by disbelief in their physical infirmity, is a continuing puzzle.

If the MEA wants the money that badly, why don't you drop the physical exertion fundraising by 'CFS' patients, and instead campaign for the adoption of the CCC/ICC in Britian (as in the '50 Experts letter to the US HHS)?


Your membership would increase then substantially, with greater interest in raisng money for the MEA by means that do not give relentlessly damaging messages about ME to the public.

Reply:

As I have already stated, the number of posts that have been deleted on MEA Facebook in relation to this discussion is very small in number

They have only been deleted because they contained comments that were aggressive or offensive towards another person who was taking part in the discussion

If you go through the discussions on both the current topics - the editorial on exercise from our Chairman and the one on the sponsored walk and mobility scooter ride - you will see plenty of critical comments

As with any heated internet discussion, it is difficult to assess the overall public opinion

The number of people liking the editorial on exercise by Neil Riley (=99) far exceeds the number of critical comments, and the number of likes for the item on the walk also exceeds the number of people making critical comments

I would also point out that we have just had a very successful Xmas research fundraising campaign to continue the work of the ME Biobank at the Royal Free Hospital in 2015 that we have been funding for the past two years - almost £30,000 was raised in just over 4 days!

MEA membership is rising compared to last year and judging by the number of people who contact us for support, advice and information each year (around 4,000 to ME Connect via phone or email) a huge number of people do appreciate what we are doing in relation to benefits, education, information, personal support and research >>
http://www.meassociation.org.uk/201...ociation-do-and-why-our-august-2014-snapshot/

We are listening to what people are saying and trustees are discussing the critical comments - which is why our fundraiser has started a separate discussion on what sort of fundraising events people with ME/CFS want to see taking place, or not taking pace

But, as I've already asked the critics, which other research funding charities in the UK refuse to accept donations from people who are doing a physical activity challenge?

Because I am not aware of any that do refuse to accept such donations

MEA Facebook discussion: https://www.facebook.com/pages/ME-Association/171411469583186

 

[charles shepherd]

Whether such a fund raising activity has a negative or positive public relations impact depends hugely on the public relations effort that goes with it.

How this is handled can completely alter the impact on the public.

For example, if a lot of photos of an exhausted person, or one relying on a mobility scooter, were posted in various places, this would enable people to not get the wrong idea. A short video clip of a slow shuffle rather than a brisk athletic walk might also help. These need to be genuine photos or videos however or it will be subject to criticism that it was staged.

What concerns me mostly about public relations, in general, is that the number of negative stories and implications vastly outweighs the positive. People tend to believe in what they see the most unless they take the time to investigate.

I think the objection largely comes from the link to severe ME awareness. Its not so much that a milder patient can do this, but that it comes at a time when the intended message is about the severe end of the spectrum.

I have had times in my illness when I could walk very very long distances ... at a slow pace. At other times a marathon is walking a few meters to my electric jug.

A positive spin that I think can be pushed is not that ME patients can perform hard physical activity, but that despite our exhaustion and pain we can have determination - spun right this would directly counter arguements that we have fear of movement.

I still think exercise based challenges are not a great idea. Perseverance, as in surviving isolation and incapacity for long times, could be shown using my webcam or locked in a room examples. These would much more effectively demonstrate the illness.

There was an earlier point made that webcams could be challenged by the assertion that this was all staged, if I recall correctly. Now it would help if patients who did this did release their names. The main counter to this though is duration. Live webcams over months ... who is going to stage that?

PS Sometimes we can have increased energy, but this can also be used positively is presented right. Lately I have had more short term energy, maybe double what I had a few weeks ago, and this shows. My capacity is still rubbish, but that small improvement has greatly improved my mood, and it shows to people I am talking with. In fact it shows enough that in the back of my thoughts I am worrying people might jump to the conclusion that I am much better than I am. Appearances do affect how people think about things.

Reply:

Thanks for making a very constructive and helpful contribution to this discussion in relation to how this sort of fundraising activity should be presented and discussed with the media when it actually takes place

If you have been following the MEA Facebook discussion you will have seen that I have previously made some suggestions about how, for example, an event of this nature could be used to demonstrate to local media the almost total lack of hospital based services in the UK for assessment and management of people with severe ME/CFS

As I have just said, MEA trustees are taking note of what is being said by people

And the wider issue of what sort of fundraising activity is acceptable and not acceptable to people with ME/CFS is something that I'm sure trustees and advisers will be discussing when we next meet in Buckingham for the next Board meeting in 2015

 

[Wildcat]

@charles shepherd and all

Charles wrote: Q: "..which other research funding charities in the UK refuse to accept donations from people who are doing a physical activity challenge?"



Wildcat wrote: A: Charities whose membership and people they represent are not abandoned by their friends and relations who believe they are not genuinely physically ill, or who believe the sick person could exert themselves if they made an effort...

Charities who don't represent very sick people who have no medical support because of disbelief in their physical illness....their doctors don't believe in ME, or DO believe in Graded Exercise as cure.

Charities whose members do not feel suicidal because of medical and society abuse ...

Charities whose fundraising choices do not Damage the very people their fundraising claims to want to help.... I could go on listing the widespread abuses ME sufferers are subjected to by individuals and institutions of course.


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


What is the point of the MEA criticising the PACE Trial message and the Media Message of "Do More Exercise to Recover from ME", whilst scoring own goals every year by encouraging physical exertion/endurance fundraising by people who say they have ME. The MEA may say that you don't encourage such types of fundraising, but accepting and publicising such fundraising does encourage others to do the same kinds of stunts.

The public don't read the small print and fine details. The message they get from these fundraising activities is that some people with ME can do them, so we all could if we adoped the mindset that we won't let ME hold us back.

.

 

[Aurator]

The message they get from these fundraising activities is that some people with ME can do them so we all could if we adoped the mindset that we won't let ME hold us back.

I'm not sure they necessarily do. I don't think everyone assumes that because one patient with a particular chronic illness participates in an endurance activity, this means all patients sufffering from that illness could do the same if only they tried hard enough.
A more fundamental objection might reasonably be put forward that whatever the people participating in these endurance events may actually be suffering from, they have presumably, like all of us, received a bona fide diagnosis of ME/CFS, and whatever they are capable of doing physically they are capable of doing as bona fide sufferers of the same disease the rest of us have. With luck, one day the funding such people help to provide may produce research that shows definitively what ME/CFS is, how it can be treated, and whether these particular fundraisers whose public exposure some of us feel threatened by really had ME/CFS in the first place.

 

[alex3619]

I'm not sure they necessarily do

I think this is a fair point, but here is the counter-argument. Those who already have an opinion will use an exercise challenge to reinforce their opinion. These events can be done I think but we cannot consider events separately from public relations. How something is seen has an impact.

Now a proper interview of the walkers, pre-prepared and ready for release, which explains the controversial issues, would be immensely helpful when the spin goes out of control. Lining up possible reporters beforehand might also be helpful.

 

[HowToEscape?]

I don't mean to be abrasive, but I also want to throw in a data point. unfortunately I can't compose a well written message -- brain fog + time.

In my experience exertion is disastrous but exercise, specific activity concentrated in time and only undertaken after considerable rest, has a positive effect. Lately I've been too weak to attempt it, though I've managed a couple bursts in the past week.
In my experience, it did not cure the disease (I thought it was doing so, but had a relapse after attempting regular activity), but did improve my overall condition significantly as long as I was able to keep it up. But it is not so simple as that.

• One needs to be well enough to start. When one is too weak to place coffee and filter in the coffeemaker, drink one cup, then sit around for 10 min while it kicks in, forget it.
  
• One must be able to afford a crash of 1-5 days afterwards; that is you won't be answering mail, handling paperwork or leaving your residence on an errand except as a passenger with someone with you at all times for some time after.
  
• Crashes will get shorter if one can continue. These are not the same crashes as from low-level exertion, the latter is much more harmful in my experience. I've had several months long crashes from "harmless" activities, such as sitting at a long lecture, being at someone's birthday party etc.
• Exercise should be short, stopping before one is tired (duh).
  
• It must be intense enough to sweat & raise heart rate. It is counter-intuitive, but I have found that walking more than a trivial amount is dangerous with zero benefit, while running for the same distance causes a shorter crash with benefits accruing.
  
• One will likely start feeling better in around a month but you are still vulnerable to a severe crash from what appears to be normal, harmless activity. e.g. I got to a point where I could exercise for 45 min and recover the next day (same day was toast), but then had a months-long crash after attending a pep-talk type motivational workshop for a day. Even bringing a mat and listening while horizontal was not safe, much to my surprise.
• It will probably help with sleep at night, and with sleeping less during the day.
  
• Immediately after exercise I usually had a rare few minutes of feeling normal. Not chemically-buzzed, not elated, just pleasantly normal, as I was on a decent day before the CF/ME hit. This would last until I cooled off, 10-20 minutes. Almost nothing else produces this result.

When I was able to continue exercise for 6 weeks without something else causing a crash, my baseline state improved; I had less brain fog, and periods of over an hour of feeling more or less normal. Very disorienting, as I then was able to think actual thoughts. I could also handle more activity - I could go something that took 30 or 45 minutes without very much trouble afterwards, as opposed to being KO'd after a one-block round trip. BUT, longer, 'harmless' time out of the house turned out to be trouble.

-- Oh, the walk/workout for ME is a rotten idea. Sorta like showing the dangers of car accidents via people who walked away from a crash. The message received will not be the message spoken.

 

[Min]

In the UK it is the severely affected who suffer most from the abuse, neglect and contempt of the medical profession, and the attitudes of other people, arising from the misrepresentation of M.E. in the media.

Time and time again on tne 25% 's facebook page bed bound sufferers in nursing homes are reporting horrific abuse from staff who do not believe they are physically ill.

The MEA's portrayal of ME sufferers as in this photo on their facebook page, and its repeated taking donations raised by 'M.E.' sufferers undertaking physical challenges such as toughmudder ( and its repeated shouting down or silencing of those who try to point out how inappropriate this is) actually has the potential to harm the worst affected of those the charity purports to help.

It is particularly inappropriate during severe awareness week.

 

[Keela Too]

I put my thoughts on the MEA page and also copied them into a blog post.

http://sallyjustme.blogspot.co.uk/2014/12/thoughts-on-fund-raising-for-me.html

 

[Min]

There is a second person with 'M.E.' who is going to walk the entire 900 miles.

Charles Shepherd asks

But, as I've already asked the critics, which other research funding charities in the UK refuse to accept donations from people who are doing a physical activity challenge?

The UK charity Invest in ME, who fund biomedical research, have very clearly stated they will not accept donations from M.E. sufferers raised by endangering their health in this way.

 

[Wildcat]

.
The MEA made a Trustees’ statement about inappropriate sporting type fundraising by people who are ill back in early 2013. Has the MEA since changed its mind and policy on this issue?

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



Summary of ME Association board of trustees meetings in February, 2013

http://www.meassociation.org.uk/201...-board-of-trustees-meetings-in-february-2013/


‘Other fundraising events – ideas always welcome!’

‘While runs, bike rides, skydives and other sporting events are very effective ways for carers, relatives and friends to raise money for The MEA, they are clearly not appropriate for people who are ill. So we continue to welcome the views of members on how people with ME/CFS might play a more effective role in fundraising.’

.

 

[MeSci]

• Crashes will get shorter if one can continue. These are not the same crashes as from low-level exertion, the latter is much more harmful in my experience. I've had several months long crashes from "harmless" activities, such as sitting at a long lecture, being at someone's birthday party etc.

My experience has been the complete opposite. If I continue overexerting for a period of days, the PEM tends not to kick in as long as I am doing it, but can be near-life-threatening afterwards. Just 3 days of overexertion can put me in hospital.

I know that you try to separate exertion from exercise, but I cannot see how they are fundamentally different. Most of us need to use all available energy just for the basics (if we are well enough to do these), e.g. shopping, cooking, washing-up, laundry, trying to keep house and garden from becoming pigsties, making phone calls, getting to doctor appointments, and even having the odd visitor or social outing.

I note that you also say:

Lately I've been too weak to attempt it

which suggests that you are not improving.

So I don't understand the rationale behind your recommendations.