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

[eafw]

‘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.’

Yes, no one is complaining about people who are healthy doing physical fundraisers.

The complaint is that for someone to engage in a high level of activity, claim to have "ME" and whatsmore be backed by a charity that is supposed to be advocating for people who are genuinely and seriously ill with the condition - that is a real problem. It is actually harmful to us, and I'd like to see MEA address that.

 

[charles shepherd]

@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.

.

Reply:

The MEA is very well aware of all the problems facing people with ME/CFS in relation to DWP benefits, social care, lack of NHS services, lack of research, flawed research, lack of appropriate medical education etc - and so am I from having personal experience of this illness

And if you read our What Does The MEA Do and Why item on the MEA website you will see all the actions we are taking to try and improve the situation

But the question I asked was:

Is it OK for all the other ME/CFS research funding charities to accept donations from people with ME/CFS, or have recovered from ME/CFS, who are raising funds by initiatives that involve some form of physical activity?

Or is it just the MEA that should be refusing to accept donations from these sort of fundraising activities?

 

[charles shepherd]

Yes, no one is complaining about people who are healthy doing physical fundraisers.

The complaint is that for someone to engage in a high level of activity, claim to have "ME" and whatsmore be backed by a charity that is supposed to be advocating for people who are genuinely and seriously ill with the condition - that is a real problem. It is actually harmful to us, and I'd like to see MEA address that.

Reply:

So is it OK for all the other ME/CFS research funding charities to accept donations from people with ME/CFS, or have recovered from ME/CFS, who are raising funds by initiatives that involve some form of physical activity?

Or is it just the MEA that should be refusing to accept donations from these sort of fundraising activities?

 

[MeSci]

Reply:

So is it OK for all the other ME/CFS research funding charities to accept donations from people with ME/CFS, or have recovered from ME/CFS, who are raising funds by initiatives that involve some form of physical activity?

Or is it just the MEA that should be refusing to accept donations from these sort of fundraising activities?

I think that the same should apply to all ME charities. It may require that the fundraiser state in a questionnaire that s/he has been fully recovered for a period of time, or that s/he is physically fit with no illness with which the fundraising activity is incompatible.

I can see how this might present difficulties, but I think that there should be some kind of screening.

 

[Wildcat]

.

@charles shepherd wrote:

"So is it OK for all the other ME/CFS research funding charities to accept donations from people with ME/CFS, or have recovered from ME/CFS, who are raising funds by initiatives that involve some form of physical activity?

Or is it just the MEA that should be refusing to accept donations from these sort of fundraising activities?"


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



Wildcat writes: Invest in ME and the 25% Group do not accept funds raised by people who claim to be sick with ME yet do extreme physical challenges with publicity that is damaging for the majority of ME patients.

Action for ME (AFME) do. And numerous ME sufferers equally express their concern, opposition and despair to AFME about the wrong and harmful messages those fundraising activities send out.

I don't know if children’s charity AYME take money raised by Tough Mudders challenge/record setting paddle boarders/marathon runners who claim to be ill with ME.


But the MEA made a policy statement about that in 2013 (that such activities are not appropriate fundraising methods for people who are ill). So why are you still doing it?

Its surprising that the MEA do not take the widespread concerns more seriously, but continues to praise the individuals who do these feats of physical endurance, whilst arguing at length with the concerned patients who object to them.
.

 

[Keela Too]

Reply:
But the question I asked was:

Is it OK for all the other ME/CFS research funding charities to accept donations from people with ME/CFS, or have recovered from ME/CFS, who are raising funds by initiatives that involve some form of physical activity?

Or is it just the MEA that should be refusing to accept donations from these sort of fundraising activities?

In my view, it is not acceptable for ANY health orientated charity to accept funds raised by doing the very thing that is known to harm individuals with the health condition concerned.

MEA in particular have been involved in promoting patient attempts at doing Tough Mudders, Extreme Paddle Boarding, Mega Walks etc. and these are activities that would be regarded as extreme by ordinary normally healthy people.

These events seem to go totally against the MEA policy stated above.

Has that policy changed?

 

[MeSci]

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

Excellent post - good comments too.

 

[lazybones]

Coming into this conversation late so if I'm duplicating anyone's comments, apologies.
It may be acceptable for patients suffering from other illnesses to advertise physically challenging, sponcered events because the public have sympathy and understanding of the nature of most illnesses. BUT this does not apply to M.E!
We spend our very limited energy and time trying to raise awareness of the debilitating nature of the disease and trying to get the message out explaining what PEM actually is and the risks involved with too much physically activity plunging us into an even more severe form of the illness.
I feel very strongly that it is impossible to present these physically challenging fundraisers in any other way other than to make us a laughing stock in the media.
We have to live, or should I say survive, by applying carefully paced daily activities to try to hold on to our current severely restricted energy levels but it's IMPOSSIBLE to explain that to someone who doesn't know anything about ME!
N&M support group are in the process of making a public statement concerning patients doing physically challenging fundraisers. The reason being, we were recently approached by a patient offering to what he felt as a last massive push before accepting the restrictions on this plummeting energy levels. This patient is only recently diagnosed and did not fully understand the implications for his own health and the message this would have sent out to family, friends and the general public. We tried to better educate him in the dangers of such a venture and firmly said we would not allow the support group name to be associated to his sponcered fundraiser.
Despite our great financial needs, the decision was taken not to accept money raised by such methods and our priorities remain for raising awareness and promoting accurate education of the seriousness debilitating nature of the disease.

 

[Keela Too]

I am glad that this has now come up separate to the efforts of one individual. I have always felt sorry for the well intentioned individual who gets caught in the cross-fire of the debates that result from these extreme fundraisers.

I am much happier now that this is a discussion "in principle".

I think there is much strong feeling amongst long term patients over this issue, and it is good that this can now be discussed without hurting the feelings of an individual fundraiser.

 

[charles shepherd]

.

@charles shepherd wrote:

"So is it OK for all the other ME/CFS research funding charities to accept donations from people with ME/CFS, or have recovered from ME/CFS, who are raising funds by initiatives that involve some form of physical activity?

Or is it just the MEA that should be refusing to accept donations from these sort of fundraising activities?"


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



Wildcat writes: Invest in ME and the 25% Group do not accept funds raised by people who claim to be sick with ME yet do extreme physical challenges with publicity that is damaging for the majority of ME patients.

Action for ME (AFME) do. And numerous ME sufferers equally express their concern, opposition and despair to AFME about the wrong and harmful messages those fundraising activities send out.

I don't know if children’s charity AYME take money raised by Tough Mudders challenge/record setting paddle boarders/marathon runners who claim to be ill with ME.


But the MEA made a policy statement about that in 2013 (that such activities are not appropriate fundraising methods for people who are ill). So why are you still doing it?

Its surprising that the MEA do not take the widespread concerns more seriously, but continues to praise the individuals who do these feats of physical endurance, whilst arguing at length with the concerned patients who object to them.
.

Reply

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

 

[heapsreal]

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.

 

[heapsreal]

What about someone doing a fundraising like some type of run after they have mentioned what has treated their biological issues and abnormalities like ampligen, valcyte or rituximab and say after this treatment i was well enough to train for this run. We need more money into research to help prove these treatments that are only available to a small percentage of people can and should be used for all sufferers of ME and also look for more treatments for those that dont respond to these treatments.

 

[Keela Too]

Reply

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

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!

 

[Min]

Reply:

So is it OK for all the other ME/CFS research funding charities to accept donations from people with ME/CFS, or have recovered from ME/CFS, who are raising funds by initiatives that involve some form of physical activity?

Or is it just the MEA that should be refusing to accept donations from these sort of fundraising activities?

I repeat that the charity Invest in ME, who fund biomedical research have issued an unequivocal statement that they will not accept donations from ME sufferers who endanger their health to raise funds.

There is a huge amount of dismay amongst severely affected sufferers that their awareness day is being hijacked in this insensitive way.

 

[Sleepyblondie]

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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.



.

 

[Sleepyblondie]

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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.



.

 

[Sleepyblondie]

Well put . Wish I could express myself that well, completely agree

 

[Sleepyblondie]

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.

 

[Sleepyblondie]

I hear what you are saying and I am glad this works for you sometimes.
I, too, have tried it and it made me permanently worse.
We are all trying to help others - you by sharing your experience, me by sharing mine.
Unfortunately, far more people are made permanently worse, like I was. I don't want anyone else to deteriorate to this level. This deterioration is confirmed by ME Ass, in the attached screenshot which Charles Shepherd gave me permissions to share (sorry it is untidy). Young people have a better chance of recovery, but only a small number of adults return to full health and there is always a possibility of relapse. Please read the full comment by Charles Shepherd

 

[Sleepyblondie]

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:



which suggests that you are not improving.

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