ME Association magazine summer 2019

Snowdrop said:
It's fine for him to share his experience of having ME. But the article reads as prescriptive for others and that's a problem. And it is patronising. It doesn't take into account a very large difference in the circumstances and often differing priorities of other people. Just do what I do and all will be well.

There is already way too much of this kind of telling us how to live from know nothing 'experts'. Why reinforce this message. I agree with others that people don't hide under the covers waiting for the magic moment when they feel well. He seems clueless and just repeating myself here--patronising. And we should expect better from a charity whose purpose is to consider the bigger picture.
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This.
 
Cinders66 said:
He ended saying he was worried that if people didn’t ever try they would never improve.
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Wow, Neil, have you been drinking the Kool Aid? :eek:

Who's 'not trying'? I don't know anyone with ME who isn't massively trying, all the time every day. This is such BPS codswallop 'they need encouraging to try harder, they just think they cant do things. they could if they tried'.
When I read the article I thought 'well done for much of it, & it's never easy to share one's personal story, but oh dear that could have been edited better'.
I thought he'd merely phrased it badly, but now after discovering he said the above when challenged about it....

I'm a bit shocked to be honest, I've always respected Neil but this is very worrying...
 
Cinders66 said:
It was a post on July 15th on their Facebook , if you want to read for yourselves. I haven’t quoted verbatim so perhaps read before forming conclusions.
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NelliePledge said:
Any chance you can post a link?
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I imagine it must be on this post

However, my Facebook on my phone is not allowing me to view all the comments.... could somebody take a screenshot for me please?
 
This is the post but I also can’t see all comments. Then I went onto it on the fb app and even though it says 15 commevts, only 9 are showing. Maybe they deleted the comments?
 
The main part of Neil Riley reply is here , i haven’t copied my comments or the bit in response to the more personal aspect of my comment. people can read further if they Wish but it’s too personal for me to just post them elsewhere


As you imply, we ME patients are all different and I can only speak from my own experience of the illness. I have had 33 years of it and gone through many stages. Some you will recognise and others,not. My way of managing my ME life will not be yours but for some I hope that what I have found works for me will also work for them. None of us yet has the answer. All we can do is to try and see what works. There will be some knock-backs but I honestly feel that if we don't try then we run the risk of never improving.

Thank you so much for writing. I do hope you improve.

Neil Riley

Chairman of The ME Association'
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Cinders66 said:
There will be some knock-backs but I honestly feel that if we don't try then we run the risk of never improving.
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I'm sure he means well, but that's not a helpful comment. It's encouraging people to put their health at risk trying out unevidenced advice just on the basis that someone said 'it helps me'. That's fine if it's general stuff like try to eat as healthily as you can manage, or 'listen to your body', but I don't think it's fine to make blanket recommendations that we all try to get out of bed every morning and get washed and dressed regardless of how we feel and how severe our ME is.
 
Trish said:
I'm sure he means well, but that's not a helpful comment. It's encouraging people to put their health at risk trying out unevidenced advice just on the basis that someone said 'it helps me'. That's fine if it's general stuff like try to eat as healthily as you can manage, or 'listen to your body', but I don't think it's fine to make blanket recommendations that we all try to get out of bed every morning and get washed and dressed regardless of how we feel and how severe our ME is.
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Tbh I think that it puts the blame on us for not improving, just as the last paragraph implies we can take Our fate in our hands. You can’t write like that in a ME magazine and someone should have picked up that it could be potentially problematic afaic. In my comment on their page I say that just some acknowledgement that other people existed, that there were sometimes unavoidable reasons for staying in bed long term was all that was expected. Afaic It’s similar to bps school to imply we can all get ourselves better by trying and not being afraid to get out of bed. If i was in early yaers bedridden and my drs or parents saw this, its bad news. If it was common for people to go posting hey I’m taking long term bed rest as an idea to try to heal okay, but no one is taking it as an "option", no ones lying around not hoping to feel able to do more or trying to see if possible to do more.
 
Ebb Tide said:
Personally I think this getting washed business is highly over-rated.
Managing to feed myself has always seemed a higher priority (there is no-one else here to do it for me) and I'm 'only moderate'.
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Exactly. There have been times when I skip the shower so I can use that energy to cook something. It's a balancing act.

As others have said, he has completely ignored severe ME patients who can't even sit up without overexertion. But even aside from that, I don't understand the advice to "Do the same thing every day" even for moderate or mild ME patients.

I'm in the moderate camp. I'm unable to work. I spend most days at home.

But I can go out and do errands if I pace myself carefully and my luck holds (there's always an element of luck/fate/whatever - some variables just can't be controlled). I'm also supported by my husband (financially and emotionally). Knowing that I have backup if I crash (there will be food in the house even if I can't do anything, I don't have to worry that we can't pay the mortgage/rent) is a huge help. I don't take that for granted.

Even with all of that, I can't understand the idea that doing the same thing every day is somehow better for me than alternating my level of activity. In fact, if I make sure to include "rest days" (often several in a row), where I do much less than normal, then I am able to do *more* activity in the long run.

It's not like I can charge my battery up to 100% or anything like that. But I can get a little less payback (PEM) if I rest up before an activity. Which means not doing the same thing every day.

To me this makes sense. My PEM is always delayed by a day or two. And even if I don't get bad PEM there is always some payback after activity. It's a bad idea for me to do errands two days in a row.

At my current level I can usually bathe and dress every day. But when I was at my worst, and I felt sick after bathing, you'd better believe that I did not bathe every single day.

The only reason I can think of for recommendations along the lines of "Do the same thing every day" and "Do it whether you feel like it or not" is that folks giving this advice think many/most patients with ME are either depressed or scared of exertion. But where is the evidence of that?

I'm sure that *some* ME patients (small subset) are depressed or scared. Those patients may need to be encouraged to try.

But the ME patients who are on these forums, or reading these magazines and websites, are probably not in that subset. The ME patients reading forums/magazines/websites are already reaching out and trying to figure out how to get better, not just lying in bed.

Okay, long rant over now :D
 
Hi everyone,

I'm Neil, the author of the Article on which many of you have written comments.

Thank you for writing. I learn a lot from these exchanges. So what can I offer in addressing your very relevant criticisms?

First, please read the whole Article. Selective quotes can take things out of context. Secondly, I was asked to write an Article about my experience of having ME for a lengthy period. That is what I did. It was my experience and therefore couldn't be yours. It was not an Article by our Medical Advisor for the ME Association advising how to manage your illness. It was "A lifetime living with ME" Article by me.

I wrote that I was in bed almost totally for the first 7 years. Looking back I wish I had tried harder to get out of bed for longer and more often. I see that as a big mistake on my part and wrote that I hoped others would not make the same mistake as me. I gave my advice to rise from your bed and walk once the initial illness has passed. I still believe that. It may only be a walk to the bathroom or to the lounge but I believe that you must try and move from your bed when the worst of your initial symptoms are over. But my belief may not be yours. You may look to other ways of dealing with your illness. Some people swear by supplements and diet, others by various Techniques and Processes sold to vulnerable patients by people who claim cures. Each of us can only say what they found works for them. That is why our charity is spending hundreds of thousands of pounds on scientific research to discover what causes our illness and then find a treatment that does not depend on individual belief but on proven research. Until we get a cure then all we can rely on is anecdotal advice given and discussed in forums like this.

There have been comments about the ME Association not representing severely ill patients. I think that is wrong. We recently held a Severe ME Week event when our website and all our social media channels dealt with it throughout. We have two trustees with severely ill children and I can tell you they are wonderfully powerful advocates for Severe ME patients. Look at the photograph of "Real ME" people that we published through ME Awareness Week. They were shockingly truthful, pain and fatigue showing in every pore.

I guess I could have written a really bland and boring account of my story of living with ME. It would have been full of "may", possibly" or warnings that those of a delicate disposition should look away now. But that is not me. I am passionate about finding a cure for ME. It blights my life and those of my family. My sister died last week in Australia. I cannot fly there and cope with the turmoil of her funeral. I do not have the physical or emotional strength to do it. Instead one of our daughters is going in my place. That is what it means to have ME. It devastates you in every possible way, every day of your life.. That is why I became a trustee of the ME Association, a charity formed to help people like you and me. I do my best but nobody's perfect. I get things wrong, express myself badly and all over the World people may find fault. That is the benefit of forums like this. An interchange of views, sometimes critical but often constructive, that help us understand one another and make some progress in understanding ME. Now I will shut up, turn off my computer and go back to lying on my bed. A bit of Pacing is needed.
 
Thank you for coming on here @NeilH
I appreciate that this is your story, and that we are all different. I’m still not sure that seeing not getting out of bed as a mistake that others might want to avoid is necessarily good advice. For you, obviously you got to a point where you felt able, with however much effort it took, to get out of bed every day and not suffer a setback. I’m lucky enough that I can get up and shower and dress and do some stuff every day. But - and I think it’s a big but - many people cannot , however much they want to and however hard they might try. Guilt has absolutely no place in our lives. Most of us do probably more than we should, and more than is possibly good for us. I think that is true for me. I am still deteriorating - and it might be because I do too much. It certainly isn’t because I don’t do enough.
 
NeilH said:
I gave my advice to rise from your bed and walk once the initial illness has passed. I still believe that. It may only be a walk to the bathroom or to the lounge but I believe that you must try and move from your bed when the worst of your initial symptoms are over.
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I live on my own.
I was initially off work with what I thought was a flu bug for 5 days. I didn't have anyone to care for me so I had no option but to get out of bed, feed myself etc
I attempted to returned to work but was sent home the same day.
I was then diagnosed with pneumonia. Again, I had no one to look after me.
After a month and several rounds of anti-biotics, I felt almost completely well and persuaded my doctor to sign me off so I could return to work.
I lasted a day and a half; I don't know how I managed to get to work (1hrs travel by bus) on the second day.

For the next few months I *had to* get out of bed, go down the stairs on my behind to get to the kitchen, and crawl up the stairs to get back to the bathroom and my bedroom.
I started to occasionally get *weird symptoms* that I had not experienced before.
They began to increase in frequency and severity. Still I tried to push on and continue to do things at home that I had previously done before without a second thought, but which now felt like feats of endurance.
I felt that I had to keep going, I didn't want to end up bedbound/in a wheelchair and thought that this was the way to prevent it.

I was diagnosed with PVFS, and a couple of months later ME.
I remained almost completely housebound for the next 5 years.

So maybe the fact that I tried to keep going, allbeit in a very limited capacity, kept me from being completely bedbound (but I did spend a lot of time on the sofa).
Or, if I had been cared for, not kept pushing myself and been able to rest more , I might have managed to recover from PVF, and even might not have developped ME in the first place.

(over the next 12 years , through careful management, trial and error, I have made some marginal improvements but I am still housebound for most of the time).

As Daisy said in her post, I certainly don't think that 'if I'd tried harder' it would have resulted in a different outcome, but rather that 'if I *hadn't* tried so hard' .....just maybe
 
Given that the whole article has been posted on this thread there’s no reason to assume that people were only commenting based on selective quotes.

As someone with gradual onset ME your comments about not getting up just don’t reflect my experience. I was undiagnosed for at leas 8 years during which time I very much got up out of bed and went to work or later once I had diagnosis and was trying to get back to full working hours after a few weeks off I got up and worked at home. On many occasions even worked in bed not wanting to let on I wasn’t well enough to work.

Like @Sly Saint i live alone and had to get out of bed to go to the loo and get myself food. I’m no where near severe ME but I still need to spend a good chunk of some days in bed due to feeling at my worst in mornings every day and obviously PEM having flu like symptoms. Since I’ve had ill health retirement I can manage my activity much more to suit my priorities. When I’m in bed it is because I need to be in bed.


ETA I realised this possibly comes over as blunt and grumpy. Obviously @NeilH you are entitled to express your own experience just as any of us are. Just as we are entitled to discuss your article. I’m a member of ME Association I don’t agree with the MEA approach to everything (don’t get me started on the foot in mouth it’s real it’s physical slogan :banghead: ) but I do appreciate all the work done on research, the Purple Book and the more recent work on highlighting real people.
 
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Hi Neil, thank you very much for coming on this thread and responding to our comments and concerns. I think many of us look back at particular stages in our illness and wonder whether, if only we had tried to be more active, or been able to be less active, our outcome might have been different.

I take your point that it was an article about your own experiences, but it was also an article by the chairman of the most respected ME organisation in the UK, so whatever you say carries weight in the eyes of readers, especially those looking for advice about how best to care for ourselves or our loved ones who have ME.

That gives added responsibility to you to be extremely careful not to give advice that is not evidence based. Thousands of readers will take it as MEA backed advice, and severely ill patients could be 'encouraged' to do more than is good for them on the back of that advice. And be judged as not trying hard enough if they can't follow that advice or get sicker from following it.

There has been no research on 'aggressive rest therapy' so we can't say it is contraindicated in every case.

I will not divert this thread by telling my own story, I've already told it elsewhere on the forum, you can read it here. Basically with two separate ME like illnesses 12 years apart, aggressive rest therapy was followed by full recovery in one instance, pushing through was followed by 30 years ongoing and worsening illness in the other. I have no idea whether acting differently would have led to different outcomes in either instance.
https://www.s4me.info/threads/when-did-my-me-start-a-personal-story.7497/
 
Trish said:
I take your point that it was an article about your own experiences, but it was also an article by the chairman of the most respected ME organisation in the UK, so whatever you say carries weight in the eyes of readers, especially those looking for advice about how best to care for ourselves or our loved ones who have ME.

That gives added responsibility to you to be extremely careful not to give advice that is not evidence based. Thousands of readers will take it as MEA backed advice, and severely ill patients could be 'encouraged' to do more than is good for them on the back of that advice. And be judged as not trying hard enough if they can't follow that advice or get sicker from following it.
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This.
 
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