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

[charles shepherd]

@charles shepherd I still don't see how this is any different and not sure if my point was clear. If former lung cancer patients (who now claimed to be "cured" - whether they are cured for life or having a return of cancer years later) were to smoke for a "fundraising challenge" it is a risk to their health. To me, this is no different than having a person with true ME/CFS do a physical challenge- it is a risk to their health.

Yes there are risks to everything and anyone could be in a car accident at any time, etc, and I am not saying that no one should live their lives. Any individual with ME/CFS can do any challenge that they want and I am not saying to take away their freedom. My problem is that a charity that claims to understand the illness and to want to help these people is doing a physical challenge to promote awareness of "Severe ME." On my absolute best day, I cannot walk more than a few feet without getting short of breath. But I am not bed-bound, not in a nursing home, not on a feeding tube, and there are people with severe ME who are.

I feel like this challenge is very disrespectful of those people and spreading misinformation and stigma. But I am running out of energy to continue this debate and leave it up to everyone else as it seems like a losing battle .

Reply:

I agree that the (complete) recovery rate is very low

But as I've pointed out before, the charity sector has a duty to also give hope to people, especially children and adolescents, that improvement and recovery can and does occur - even though it is not the norm

The number of media stories relating to recovery is in fact fairly low and the MEA does not concentrate its efforts on presenting recovery stories - we don't have that many to present in any case

I cannot disclose anything further at this point but there will be some important media coverage of ME/CFS before Xmas in a very well known and respected publication. And this is not a recovery story.

Reply

Surely this all goes back to the degree of severity and variability that someone with ME/CFS is experiencing

On a personal basis, during a good patch, I can walk several miles through our Cotswold hills before I reach the point where I know I should be stopping. I can do this without any risk to my physical health and I regard it as an important contribution to my pacing programme - which has allowed me to slowly increase my activity/exercise tolerance over a period of several years.

So should the MEA refuse to accept any donations I could raise for medical research if I do a five mile walking challenge?

I can, in fact, walk 10 miles up and down the hills - but pay for this with post-exertional malaise.

But I really enjoy my walking and accept the consequences/risks - just as I do when I have been up to and down to London for the day to attend medical meetings and arrive home late in the evening feeling fairly knackered!

I have again risked my health - but this time on behalf of people with ME/CFS

Should I stop going to medical meetings in London?

 

[Keela Too]

Walking 5 miles is seen as normal. So is attending conferences.
Recent tough mudder challenges and 900 mile walks, are beyond what a normal person is likely to do.
This is what makes folk so frustrated. It is not a carefully paced 5 mile stroll of a recovered ME patient, but an extreme challenge - often of an individual still claiming to have ME.

But then a 5 mile walk for charity wouldn't hit headlines either would it.... so no better than a sleepathon or whatever.... so might as well do the sponsored sleep and keep the message simple.
@charles shepherd

 

[Research 1st]

I fully agree with you Keela Too, the constant let down is mentally damaging over time and time is what patients don't have. I do think there is hope but yes, one should be cautious of just how much hope is on offer as you're explaining!

Realistically I think there is some genuine positive 'shift', if not hope, in 2015. I think it safe to compromise on that. Or go more cautious and say within 5 years from now something will be wrapped up for a subset of CFS. Naturally 5 days is too long when people suffer the horrendous symptoms of ME (CFS), never mind wait another 5 years!

1) Dr Lipkin et al, are apparently saying there is something they've found (if it's in CSF fluid that is potentially good) that could explain a subset of CFS. Useful for these patients, potentially to get some recognition.

2) Dr De Meirleir,is alluding to the fact that a Lyme related disorder could potentially explain people's symptoms who are diagnosed with ME. Personally, I'm interested in this most if a 'new' pathogen has been found, e.g. a variant of Borrelia/Bartonella in which we now know there is next to nothing known about these conditions, because the government say 'Chronic Lyme' doesn't exist. Well, if it does exist (not as Lyme but something else), then 'ME' is there for the taking.

What is fundamental for the patients, is that 'tests' are offered. This is very hard to do, when tests are experimental.
Without tests, the patients remain under suspicion of malingering (thanks to promotion of GET).

I'm hoping Dr Lipkin and Dr De Meirleir published soon. If all works out eventually in years to come, people given a diagnosis of ME or CFS can hopefully find out (potentially) which subset of syndrome of disease they fit into, or even better, leave the name of ME and CFS altogether for something less personally damaging.

Theoretically, the days of GET are numbered, but only if scientists publications aren't blocked and further studies are funded. This is the huge stumbling block. A 'controversial' study, is rarely followed up, especially since in 2009 SCIENCE paper, Dr Robert Silverman sequenced his own lab contamination (XMRV) and this accidently lead to spending millions wasted on chasing XMRV that was never there.

Sadly for us, this has made health agencies super cautious of funding any 'big' new study I imagine. Hopefully this time, a researcher will include an inflammatory profile with a 'CFS'/ME claim, when attaching the claim to a pathogen. I am hinting heavily this has already been done, but I will probably be less triumphant if I test negative myself. .

I do agree, false hope is very hard to endure, without question and we need to be realistic. It is realistic, to say that the evidence for GET is poor, and will never appear. Conversely, a certain kind of inflammation (not CRP/ESR) exists in ME CFS and this can be proven, if, the patient has private tests. What we need, is this inflammation to become part of the diagnostic criteria. The CDC it appears, will fight against this. As will P2P/IOM and the UK NHS.

So we must go it alone and keep reading our biomedical ME CFS research to stay motivated, when at all possible.

 

[Keela Too]

Now biomed research - THAT is the type of "hope" story I like to hear!
Not the false "hope" of anecdotal recoveries and lottery style miracles.

 

[Min]

I wonder if charities representing sufferers of other neurological illnesses feel such a duty to give hope to to sufferers that they are repeatedly prepared risk having the illness misrepresented in the media?

I simply cannot recognise the degenerative illness I have had for three decades, complete with inability to walk more than a few yards, excruciating pain and an increasing number of very frightening symptoms, as the same one as that of the MEA fundraisers Wildcat has listed, who are doing toughmudder etc.

We are insistently told they have the same illness and treated as naughty children if we ever dare question it, but the research has never been done and no diagnostic test has ever been developed, so there is absolutely no proof.

I find it incredibly upsetting to have my illness misrepresented in the media by people doing these challenges, and to be shouted down by people much healthier and with far more energy and cognitive abilities every time I voice concerns on the subject.

 

[Min]

I fully agree with you Keela Too, the constant let down is mentally damaging over time and time is what patients don't have. I do think there is hope but yes, one should be cautious of just how much hope is on offer as you're explaining!

Realistically I think there is some genuine positive 'shift', if not hope, in 2015. I think it safe to compromise on that. Or go more cautious and say within 5 years from now something will be wrapped up for a subset of CFS. Naturally 5 days is too long when people suffer the horrendous symptoms of ME (CFS), never mind wait another 5 years!

1) Dr Lipkin et al, are apparently saying there is something they've found (if it's in CSF fluid that is potentially good) that could explain a subset of CFS. Useful for these patients, potentially to get some recognition.

2) Dr De Meirleir,is alluding to the fact that a Lyme related disorder could potentially explain people's symptoms who are diagnosed with ME. Personally, I'm interested in this most if a 'new' pathogen has been found, e.g. a variant of Borrelia/Bartonella in which we now know there is next to nothing known about these conditions, because the government say 'Chronic Lyme' doesn't exist. Well, if it does exist (not as Lyme but something else), then 'ME' is there for the taking.

What is fundamental for the patients, is that 'tests' are offered. This is very hard to do, when tests are experimental.
Without tests, the patients remain under suspicion of malingering (thanks to promotion of GET).

I'm hoping Dr Lipkin and Dr De Meirleir published soon. If all works out eventually in years to come, people given a diagnosis of ME or CFS can hopefully find out (potentially) which subset of syndrome of disease they fit into, or even better, leave the name of ME and CFS altogether for something less personally damaging.

Theoretically, the days of GET are numbered, but only if scientists publications aren't blocked and further studies are funded. This is the huge stumbling block. A 'controversial' study, is rarely followed up, especially since in 2009 SCIENCE paper, Dr Robert Silverman sequenced his own lab contamination (XMRV) and this accidently lead to spending millions wasted on chasing XMRV that was never there.

Sadly for us, this has made health agencies super cautious of funding any 'big' new study I imagine. Hopefully this time, a researcher will include an inflammatory profile with a 'CFS'/ME claim, when attaching the claim to a pathogen. I am hinting heavily this has already been done, but I will probably be less triumphant if I test negative myself. .

I do agree, false hope is very hard to endure, without question and we need to be realistic. It is realistic, to say that the evidence for GET is poor, and will never appear. Conversely, a certain kind of inflammation (not CRP/ESR) exists in ME CFS and this can be proven, if, the patient has private tests. What we need, is this inflammation to become part of the diagnostic criteria. The CDC it appears, will fight against this. As will P2P/IOM and the UK NHS.

So we must go it alone and keep reading our biomedical ME CFS research to stay motivated, when at all possible.

thank you

 

[charles shepherd]

Walking 5 miles is seen as normal. So is attending conferences.
Recent tough mudder challenges and 900 mile walks, are beyond what a normal person is likely to do.
This is what makes folk so frustrated. It is not a carefully paced 5 mile stroll of a recovered ME patient, but an extreme challenge - often of an individual still claiming to have ME.

But then a 5 mile walk for charity wouldn't hit headlines either would it.... so no better than a sleepathon or whatever.... so might as well do the sponsored sleep and keep the message simple.
@charles shepherd

Reply

Just to clarify, not that it will make any difference - this is an attempt to cover 900 miles on a very flexible basis over several months using both walking and a mobility scooter.

 

[Gingergrrl]

I find it incredibly upsetting to have my illness misrepresented in the media by people doing these challenges, and to be shouted down by people much healthier and with far more energy and cognitive abilities every time I voice concerns on the subject.

@Min, Even though I said I was done with this thread (and I am done with the debating part) I just wanted to acknowledge how much you and others with severe ME have suffered. I have been suffering for 2-3 years and can't even imagine what you have gone through in 30 years with this. It ultimately will not matter who has the louder voice right now, because once the biomedical cause of this illness is found, we will be on the right side of history and everyone will know it. That is why I support Dr. Lipkin and OMF and all the doctors and scientists who are really trying to solve this.

 

[Keela Too]

Reply

Just to clarify, not that it will make any difference - this is an attempt to cover 900 miles on a very flexible basis over several months using both walking and a mobility scooter.

Just to clarify, not that it will make any difference - this is but one example of how a headline creates the wrong image.

And, I still think the concept is wrong in principle no matter how many months or years it takes to complete the walk.

In my view, if the headline is about any mega physical event (no matter how spread out in time) then it should not be used for ME fundraising or awareness - unless of course it is taken on by healthy volunteers.

As I said before, a 5 mile stroll (which may be achievable for the mildly-affected as you rightly point out) is not going to hit headlines.

Please please think seriously about this issue. It is much more important than a simple point scoring exercise on a specialist forum.

 

[MeSci]

Reply

Just to clarify, not that it will make any difference - this is an attempt to cover 900 miles on a very flexible basis over several months using both walking and a mobility scooter.

If someone wants to do that as a personal challenge or for pleasure, and not use it for fundraising or as a big media story, that is their choice. I have no problem with that.

If they do it to raise funds for a disability charity with publicity that poses a predictable and serious risk to the public's view of the disability, I do have a serious problem with it.

There is nothing to stop people from doing what they enjoy, if they are physically able and don't mind suffering adverse consequences.

But please just stick to enjoying it, and be very careful what you say to the media, as they are notorious (especially in the UK) for twisting things, even to the extent of inventing quotes, which I have experienced myself (not in the context of ME).

 

[Valentijn]

I don't doubt that everyone has good intentions. The problem is that these people walking a large distance, or engaging in similar feats, are (at best) trying to send a very complex message. But the media and the public are looking for and spreading a very simple message.

Hence "ME patient who partially recovered after years of biological treatments is slowly shuffling a very long distance and using a mobility scooter" is going to be headlined as "ME patient walks 900 miles". A great many people stop reading there - hence any fundraising activity undertaken should not be something which can be summed up in such a manner.

And then the ME patient, after talking about how disabled patients are, about the biological research, etc, will mention how hard they've been working to be able to prepare for their walk. The author of the article won't understand most of that, so won't repeat it, but will have an extra large chunk of text in the middle of the article about how that particular patient never gave up (unlike the rest of us, presumably).

THIS HAS ALREADY HAPPENED REPEATEDLY. How many more times does it have to happen before good-intentioned charities realize that these types of efforts are doomed to complete failure at the media stage?

 

[Valentijn]

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 don't think anyone is rejecting them, or their improved health, or their hobbies. But they really are not thinking through how their highly publicized activities will effect the rest of us.

If someone wants to go climb a mountain once they think they've recovered, more power to them. And if they want to set a record? Fine - but leave ME out of it. It's completely unrelated to their former status as an ME patient, and it's extremely harmful to combine the two messages: I'm an ME patient and I'm completing an astounding physical feat.

It might make for a good book, but the media will inevitably screw up the message. All that will come out is "ME patients can do amazing things if they just apply themselves". And while some patients may reasonably be ignorant of the fall-out of their activities, charity organizations really should know better.

 

[Esther12]

All that will come out is "ME patients can do amazing things if they just apply themselves".

We don't know that.

It could be 'Oh wow - I thought ME patients were the sort who were just to lazy and selfish to do anything, but this person who recovered is putting themselves through a real trial in order to raise funds to try to help other sufferers who have not been so lucky.'

I understand you concerns, but worry that they lead to unfair pressures being put upon people who have been diagnosed with ME.

 

[Mij]

@Esther12 you are overestimating the media!

 

[MeSci]

I understand you concerns, but worry that they lead to unfair pressures being put upon people who have been diagnosed with ME.

I don't understand - pressure to do what?

 

[Esther12]

I don't understand - pressure to do what?

Pressure to not do these sorts of fund raising events.

 

[MeSci]

Pressure to not do these sorts of fund raising events.

I would have thought that was preferable - and a lot safer - than pressure TO do them, which some might be very susceptible to, in light of all the advice they may get from multiple sources to exercise (as I have).

 

[Esther12]

I would have thought that was preferable - and a lot safer - than pressure TO do them, which some might be very susceptible to, in light of all the advice they may get from multiple sources to exercise (as I have).

Maybe, I just prefer to try to avoid having pressure on people either way - leave them as free as possible to follow their own preferences and instincts.

 

[Keela Too]

Maybe, I just prefer to try to avoid having pressure on people either way - leave them as free as possible to follow their own preferences and instincts.

Happy for folk to follow their own preferences and instincts - but just don't think charities should accept funds from people who are doing things that are a known and specific risk to their particular condition.

Charities can choose to decline funds raised in such a manner.

People who go ahead with these sorts of fund-raisers often get bad flak from other patients - some of it fairly strongly worded. They may not be aware of the strength of feeling on the ground about this issue.

Personally, I think this could be avoided, if charities stopped promoting these events, and if they made it clear that they would prefer funds to be raised in another manner.

It is not fair that well-meaning individuals are not warned of this problem before they start, because they can unwittingly get caught in the cross-fire.

 

[Esther12]

Happy for folk to follow their own preferences and instincts - but just don't think charities should accept funds from people who are doing things that are a known and specific risk to their particular condition.

But with exercise and people who have had, or still have, ME, very little can be said for sure. I'm opposed to people being told they should increase/decrease/stabilise/record/anything the amount that they do. There's just not good enough evidence here to act as if we can know what is best for someone else.

Maybe some of the people who do these sorts of things will damage their health? Maybe some will benefit? Who knows. It should be up to the individual involved to decide what they want to do for themselves, and I would like to try to support other patients in doing what they want with their life.

If a person decides that they want to do this sort of fund-raising event then I think it would be unfair for a patient charity to refuse to take those donations.