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

Gingergrrl

Senior Member
Messages
16,171
@Min Thank you for clarifying that and for having the links at the bottom of your signature so people can see who the legitimate charities are. I am neither in the UK nor a member of Facebook, and do not know anything about the different British charities, so it is great you are separating them out for people to see and then each person can make their own choice re: who do donate to. Knowledge is power.
 

lansbergen

Senior Member
Messages
2,512
But why is that so? Why focus on exercise?

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.
 

Aurator

Senior Member
Messages
625
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.
The problem as I see it is that some ME/CFS sufferers have arrogated to themselves the right to speak for the whole ME/CFS community, and even to decide who is and who isn't genuinely ill. It doesn't reflect well on the individuals concerned or help to foster a climate of greater understanding and tolerance.
 
Messages
1,446
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British research team (julia Newton's team) re-assessed a large number of patients and re-diagnosed 44% with completely different conditions. In Britian the Oxford Criteria that has been so prevalently used, is so very vague and fatigue based that numerous wrong diagnoses are inevitable.

Stating that should not be seen as reflecting badlly on the patients who point it out.
.

.
 
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Messages
1,446
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In a country (Britian) where Graded Exercise (GET) and CBT are the only treatments, what we have is numerous ME sufferers being made far more sick long term (from mildly affected to severe/very severe) from being 'prescribed' Exercise by doctors who don't know who has ME because they construct it as fatigue.

Other ME patients have to avoid NHS doctors due to refusing to do Graded Exercise and being disparaged in their medical records and labelled unco-operative as a result. Those patients can be and are treated badly/abusively as a result.
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That is The Problem.

With long term damaging consequences for so many very sick ME patients..
.
 
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Messages
91
most healthy people can NOT do a 900 mile walk let alone PWME so supporting this is psycho crap from a so called ME charity
if other charities support walks etc is totally irrelevant here ...
if they do that is NO excuse Dr S ...
 

Aurator

Senior Member
Messages
625
.

In a country (Britian) where Graded Exercise (GET) and CBT are the only treatments, what we have is numerous ME sufferers being made far more sick long term from being 'prescribed' Exercise by doctors who don't know who has ME because they construct it as fatigue.

Other ME patients have to avoid NHS doctors due to refusing to do Graded Exercise and being disparaged in their medical records and labelled as a result; the patients can be and are treated badly/abusively as a result.
.
That is a problem with long term harmful consequences for so many very sick patients..
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I'm painfully aware of this. The wrongfulness and destructiveness of such goings-on are not in dispute.
 

Min

Guest
Messages
1,387
Location
UK
The problem as I see it is that some ME/CFS sufferers have arrogated to themselves the right to speak for the whole ME/CFS community

Yes it is, a huge problem when such individuals who have the attention of the media choose to represent M.E. as something trivial that can easily be overcome with determination and exercise.

I am unsure how hijacking severe awareness day with an 'M.E.' sufferer walking 900 miles will 'foster a climate of greater understanding and tolerance'. It will more likely serve to alienate and marginalise the severely affected.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Every day ordinary people are bombarded in all aspects of media about healthy lifestyle. Eat right, exercise daily. This is recommended to maintain health.

These messages are not about maintaining health. They are about blaming the victim and distracting people from looking at structural causes.

You're sick? Well, obviously, it's because you ate the wrong thing, drank too much beer, smoked too much tobacco, you didn't buy (and use) a gym membership. Of course the "right" things to do changes every day.

You're poor? You didn't go to college, you didn't get the right degree, you made the wrong choices, you didn't try hard enough, you didn't "Follow the Rules" (if one can figure out what they are!)

It's all blah blah designed to keep people off-balance and afraid. Too afraid to speak up. Too afraid to resist. Too afraid to say NO.

And afraid enough to follow orders without question.
 

Aurator

Senior Member
Messages
625
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So claiming to 'raise awareness' about how serious ME can be by doing extreme physical exertion/endurance activities is something of an own goal, and defeats attempts at realistic education about ME..
I can see why some people see things that way. Not everyone does though.
 

charles shepherd

Senior Member
Messages
2,239
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.

Reply:

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

The only posts that have been removed are a few that involved aggressive or offensive comments against someone else

As I keep saying, constructive criticism is fine on MEAF and I have spent many hours last week replying to people - even though I may not agree with the position they are taking

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

Moving laterally I have just voted for Kelly Gallagher in the BBC Sportsperson of the year award - she is an almost blind skier who skies downhill at speeds of up to 100km per hour and obviously risks her life every time she does so:

http://www.bbc.co.uk/sport/0/disability-sport/26504413


Should blind skiers be doing such a dangerous sport??

The result has just been announced - Kerry did not win
 

charles shepherd

Senior Member
Messages
2,239
.
.As I recall, patients were dismayed to have their reasonable objections deleted and disparaged by the MEA, again.
.
Reply:

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

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

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

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

Moving laterally I have just voted for Kelly Gallagher in the BBC Sportsperson of the year award - she is an almost blind skier who skies downhill at speeds of up to 100km per hour and obviously risks her life every time she does so:

http://www.bbc.co.uk/sport/0/disability-sport/26504413


Should blind skiers be doing such a dangerous sport??

The result has just been announced - Kerry did not win
 

charles shepherd

Senior Member
Messages
2,239
.
British research team (julia Newton's team) re-assessed a large number of patients and re-diagnosed 44% with completely different conditions. In Britian the Oxford Criteria that has been so prevalently used, is so very vague and fatigue based that numerous wrong diagnoses are inevitable.

Stating that should not be seen as reflecting badlly on the patients who point it out.
.

.

Reply

We have no problem with people who disagree with the Oxford criteria and wish to bring this into the discussion.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
The conversation is starting to sound as if we must form our words carefully as they will be picked apart as if we are confronting a court. Things like 'that's not precisely what I said' while it may even be true always seem like a smoke screen for not engaging with the subject. The whole thing devolves into a pissing match.

It is not possible for any of us to know if any particular individual absolutely is or is not suffering from what we term ME.
The point goes both ways. While patients with concern over the issue of fundraising this way cannot suggest that they really aren't sick with ME defenders also cannot guarantee that the fundraiser is someone who is truly representative of ME, particularly as experienced by the severely affected.

Semantics aside it just seems against common sense to fundraise this way for an illness that has as a hallmark feature the inability to create energy to function like normal. Especially on a day for awareness of the severely ill. It just seems in bad taste.
The way holding a conference for wheelchair bound people in buildings with no ramps.
Or as gingergrrl stated--the cake eating for diabetics.

But let's keep the discussion on pulling apart how things are said that's a much more interesting distraction.
 
Messages
13,774
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In a country (Britian) where Graded Exercise (GET) and CBT are the only treatments, what we have is numerous ME sufferers being made far more sick long term (from mildly affected to severe/very severe) from being 'prescribed' Exercise by doctors who don't know who has ME because they construct it as fatigue.

Other ME patients have to avoid NHS doctors due to refusing to do Graded Exercise and being disparaged in their medical records and labelled unco-operative as a result. Those patients can be and are treated badly/abusively as a result.
.
That is The Problem.

With long term damaging consequences for so many very sick ME patients..
.

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

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

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

charles shepherd

Senior Member
Messages
2,239
most healthy people can NOT do a 900 mile walk let alone PWME so supporting this is psycho crap from a so called ME charity
if other charities support walks etc is totally irrelevant here ...
if they do that is NO excuse Dr S ...

Reply

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

It will combine walking and a mobility scooter (the percentage use of each will be flexible) and with plenty of support.

The person involved has done long distance walks before.

There are, believe it or not, people with ME/CFS who have made a significant degree of improvement/recovery, often erratically and over a period of many years, and returned to a level of fitness that enables them to carefully carry out tasks involving physical activity - as can sometimes happen in other serious medical conditions such as MS

As I have pointed out on our MEA Facebook page, on a personal basis, and thanks to very careful planned activity management, during a good period I am now able to walk 8 to 10 miles through the Cotswold hills - although this does result in a degree of post exertional malaise the next day

I would be very happy to do a sponsored walk to raise funds for ME/CFS research and draw attention to the wide degree of severity and prognosis that comes with having this wretched illness
 

charles shepherd

Senior Member
Messages
2,239
Yes it is, a huge problem when such individuals who have the attention of the media choose to represent M.E. as something trivial that can easily be overcome with determination and exercise.

I am unsure how hijacking severe awareness day with an 'M.E.' sufferer walking 900 miles will 'foster a climate of greater understanding and tolerance'. It will more likely serve to alienate and marginalise the severely affected.

Reply

You are once again misrepresenting what these people are doing

They have not chosen 'to represent ME as something trivial that can be overcome by determination and exercise'
 
Messages
29
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?

Thanks. I wondered why it was so hard. It's actually very ewsy, isn't it? Thanks for helping