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UKC User Charley gives an eloquent and very brave insight into his experience of climbing and M.E. (Myalgic Encephalomyelitis).'I was 22 when I discovered rock climbing and was instantly addicted. Speaking to other climbers it was the same for them - but mine isn't the average story. Before climbing, I had no real interests, was unfit and had no social life - climbing changed my life overnight.'
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In reply to UKC Articles:
Really interesting article. It explains really well the difficulty of living with a chronic condition,but appearing to most people to be fine.
My wife was given a diagnosis of ME a few years ago, however it didn't seem to quite fit. To cut a very long,ongoing story short,with a lot of research she turned out to have Lyme Disease. As a climber and cross country runner she had picked up a lot of tick bites over the years and looking back managed to piece together the early acute stage and inadequate antibiotic treatment, and the much later chronic stage which looked in some ways like ME. Getting diagnosed and treated was almost impossible given the lack of knowledge about Lyme within the NHS.
After a year of antibiotic treatment, she is much improved.
I just wonder how many ME patients are in the same boat. As climbers we have a high exposure to ticks and Lyme.
Lyme is known as the great imitator as it mimics many other diseases such as MS,ME,Alzheimer's and Parkinson's.
My climbing partner of 20 years has been diagnosed with MS, as has another running friend, all have had numerous tick bites!
Please do your own research.
Steve
Really interesting article. It explains really well the difficulty of living with a chronic condition,but appearing to most people to be fine.
My wife was given a diagnosis of ME a few years ago, however it didn't seem to quite fit. To cut a very long,ongoing story short,with a lot of research she turned out to have Lyme Disease. As a climber and cross country runner she had picked up a lot of tick bites over the years and looking back managed to piece together the early acute stage and inadequate antibiotic treatment, and the much later chronic stage which looked in some ways like ME. Getting diagnosed and treated was almost impossible given the lack of knowledge about Lyme within the NHS.
After a year of antibiotic treatment, she is much improved.
I just wonder how many ME patients are in the same boat. As climbers we have a high exposure to ticks and Lyme.
Lyme is known as the great imitator as it mimics many other diseases such as MS,ME,Alzheimer's and Parkinson's.
My climbing partner of 20 years has been diagnosed with MS, as has another running friend, all have had numerous tick bites!
Please do your own research.
Steve
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In reply to just one more:
Not that many I would have thought as Lyme disease can be detected in a blood test, so long as requested. The thing with ME/CFS is that nothing shows up in blood tests and therefore it's harder and more protracted to diagnose.
> I just wonder how many ME patients are in the same boat. As climbers we have a high exposure to ticks and Lyme.
Not that many I would have thought as Lyme disease can be detected in a blood test, so long as requested. The thing with ME/CFS is that nothing shows up in blood tests and therefore it's harder and more protracted to diagnose.
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In reply to Mr. Lee:
There isn't a standard test for Ld that is reliable .It can take many blood tests to diagnose.
There isn't a standard test for Ld that is reliable .It can take many blood tests to diagnose.
In reply to DWS gibraltar:
Thanks that's good to know. Just done a little reading about diagnosis of Lymes disease.
Great UKC article btw. Thanks for posting it.
Re ME/CFS the below recent literature review I've found really helpful re management. I've suffered from fatigue since November (currently undiagnosed) and have been using the self-treatment methods outlined in it. It's written for a clinician but a lot of the content is quite easy to understand re the management strategies. Eg staying within ones energy envelope.
http://www.lost-voices-stiftung.org/app/download/5638817064/A+Primer+Care+f...
> There isn't a standard test for Ld that is reliable. It can take many blood tests to diagnose.
Thanks that's good to know. Just done a little reading about diagnosis of Lymes disease.
Great UKC article btw. Thanks for posting it.
Re ME/CFS the below recent literature review I've found really helpful re management. I've suffered from fatigue since November (currently undiagnosed) and have been using the self-treatment methods outlined in it. It's written for a clinician but a lot of the content is quite easy to understand re the management strategies. Eg staying within ones energy envelope.
http://www.lost-voices-stiftung.org/app/download/5638817064/A+Primer+Care+f...
In reply to UKC Articles:
Great article and really informative. The description of Cemetery Gates was inspiring and captured your love of the sport. Like many people I know very little about M.E. so I found this really interesting.
I remember one UK climber that I think had ME many years ago... Matt ??? He managed to become a really strong boulderer and I think it was because bouldering required no endurance so it was easier for him to manage with his condition. Maybe someone else knows more than me.
Anyway great that you've found something to inspire you and keep you going. Hope you continue to recover and well done for having the courage to share this.
Great article and really informative. The description of Cemetery Gates was inspiring and captured your love of the sport. Like many people I know very little about M.E. so I found this really interesting.
I remember one UK climber that I think had ME many years ago... Matt ??? He managed to become a really strong boulderer and I think it was because bouldering required no endurance so it was easier for him to manage with his condition. Maybe someone else knows more than me.
Anyway great that you've found something to inspire you and keep you going. Hope you continue to recover and well done for having the courage to share this.
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In reply to UKC Articles:
Good article, hanks for taking the time to write something and write well about s difficult thing.
As someone with MS, I can easily relate to the problems of having an 'invisible' illness and the difficulties of both utter, consuming fatigue and not knowing when you start something just how long the energy you have will last. Best wishes for managing your illness, and keep climbing as long as you can!
T.
Good article, hanks for taking the time to write something and write well about s difficult thing.
As someone with MS, I can easily relate to the problems of having an 'invisible' illness and the difficulties of both utter, consuming fatigue and not knowing when you start something just how long the energy you have will last. Best wishes for managing your illness, and keep climbing as long as you can!
T.
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In reply to Mr. Lee:
That's a great article, thanks.
Re "ME/CFS", I think that term can wind people up, particularly people diagnosed with ME after testing, since CFS is very different to ME. CFS is a syndrome only i.e. a collection of symptoms with no known unique cause or disease or diagnosis. ME is a disease which can be tested for and diagnosed.
Interesting table here for comparison between ME and CFS (it's a bit ranty):
www.hfme.org/comparisonchart.htm
That's a great article, thanks.
Re "ME/CFS", I think that term can wind people up, particularly people diagnosed with ME after testing, since CFS is very different to ME. CFS is a syndrome only i.e. a collection of symptoms with no known unique cause or disease or diagnosis. ME is a disease which can be tested for and diagnosed.
Interesting table here for comparison between ME and CFS (it's a bit ranty):
www.hfme.org/comparisonchart.htm
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In reply to just one more: The reason people with a chronic (but variable day-by-day condition) appear to be fine is because you only see them on the good days. On the bad days they're stuck at home, maybe bedbound, feeling cr*p, etc. and only immediate family/friends will ever see them like this.
People in this position (my wife used to be) get a bit p*ssed off at the "but you look ok" comments. It also teaches you not to judge disability by appearance. That person who's just parked in the disabled space may look totally ok but you would have no idea what is wrong with them.
People in this position (my wife used to be) get a bit p*ssed off at the "but you look ok" comments. It also teaches you not to judge disability by appearance. That person who's just parked in the disabled space may look totally ok but you would have no idea what is wrong with them.
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In reply to switch: Interesting, I've not seen such a distinction between ME & CFS before, certainly wasn't aware of it 10 years ago when my wife (who had it for 18 years) and daughter (had it for 7 years) recovered after doing the Lightning Process.
From a pragmatic point of view, once they got better (and the initial improvement from LP was very obvious), we couldn't care less what they actually had and whether the diagnosis was correct or could be argued about. They were ill, LP made them better, life improved.
From a pragmatic point of view, once they got better (and the initial improvement from LP was very obvious), we couldn't care less what they actually had and whether the diagnosis was correct or could be argued about. They were ill, LP made them better, life improved.
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In reply to Michael Hood:
Spot on. On bad days getting to the car parked just outside the front door is an effort; let alone the shops. That blue badge helps a great deal.
T.
Spot on. On bad days getting to the car parked just outside the front door is an effort; let alone the shops. That blue badge helps a great deal.
T.
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In reply to Michael Hood:
It's good news that your wife and daughter have recovered. I guess the debate and controversy around both ME and CFS is most relevant for those patients still suffering, for doctors researching the various pathologies and for therapists offering treatments (whether evidence-based or not). The areas on the fringes of medical understanding are ripe areas for exploitation by quacks.
It's good news that your wife and daughter have recovered. I guess the debate and controversy around both ME and CFS is most relevant for those patients still suffering, for doctors researching the various pathologies and for therapists offering treatments (whether evidence-based or not). The areas on the fringes of medical understanding are ripe areas for exploitation by quacks.
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In reply to switch:
Interesting article. I was curious about this though and tried to look up what the test or tests were as I thought there was no strict diagnostic test for ME, particularly one which would result in a diagnostic finding of spinal cord and brain inflammation implied by the name. I didn't find anything very clear though??
> ME is a disease which can be tested for and diagnosed.
Interesting article. I was curious about this though and tried to look up what the test or tests were as I thought there was no strict diagnostic test for ME, particularly one which would result in a diagnostic finding of spinal cord and brain inflammation implied by the name. I didn't find anything very clear though??
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In reply to Dave:
There's this proposed definition for ME published in 2011: www.onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
which aims to narrow down the definition relative to previous proposals.
This proposes multiple criteria to reach a diagnosis of ME, and therefore multiple tests. The hfme site has a load more detail on potential tests for the various criteria. I don't know how widely this 2011 definition has been adopted.
The Lancet UK PACE trial of various treatments for CFS, which was published in 2011, used the 1991 Oxford definition for CFS to select patients (so a broader definition than the 2011 ME definition):
www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/abstract
It would be interesting to know if a similar trial has been conducted since 2011 on patients with ME selected according to the tighter 2011 definition.
It seems there are plenty of strong opinions on all sides of this topic.
There's this proposed definition for ME published in 2011: www.onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
which aims to narrow down the definition relative to previous proposals.
This proposes multiple criteria to reach a diagnosis of ME, and therefore multiple tests. The hfme site has a load more detail on potential tests for the various criteria. I don't know how widely this 2011 definition has been adopted.
The Lancet UK PACE trial of various treatments for CFS, which was published in 2011, used the 1991 Oxford definition for CFS to select patients (so a broader definition than the 2011 ME definition):
www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/abstract
It would be interesting to know if a similar trial has been conducted since 2011 on patients with ME selected according to the tighter 2011 definition.
It seems there are plenty of strong opinions on all sides of this topic.
In reply to stp:
Matt Birch possibly? Report here http://www.ukclimbing.com/news/item.php?id=42747 on repeating Mandala Sit which mentions Chronic Fatigue Syndrome
> I remember one UK climber that I think had ME many years ago... Matt ??? He managed to become a really strong boulderer and I think it was because bouldering required no endurance so it was easier for him to manage with his condition. Maybe someone else knows more than me.
Matt Birch possibly? Report here http://www.ukclimbing.com/news/item.php?id=42747 on repeating Mandala Sit which mentions Chronic Fatigue Syndrome
In reply to switch:
Very interesting table differentiating between ME and CFS.
My experience of CFS is that is a label, it is a cop-out for doctors. If a patient has sufficient number of the symptoms they give it the title of CFS, and tell you there is nothing they can do.
They will take blood for their standard blood tests, if the results are what they regard as 'normal' then you won't even get another appointment. 'The tests say you are OK, we don't care how you actually feel'!
Very dissappointed in the standard of the NHS nowadays. Good for treatment of traumatic injuries perhaps, but not geared towards 'health' anymore.
rant over
Very interesting table differentiating between ME and CFS.
My experience of CFS is that is a label, it is a cop-out for doctors. If a patient has sufficient number of the symptoms they give it the title of CFS, and tell you there is nothing they can do.
They will take blood for their standard blood tests, if the results are what they regard as 'normal' then you won't even get another appointment. 'The tests say you are OK, we don't care how you actually feel'!
Very dissappointed in the standard of the NHS nowadays. Good for treatment of traumatic injuries perhaps, but not geared towards 'health' anymore.
rant over
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In reply to Adderbury Climber:
What were you expecting treatment-wise out of interest? You speak as though you should have a clearer diagnosis but there is generally a poor understanding in literature about CFS/ME.
> My experience of CFS is that is a label, it is a cop-out for doctors. If a patient has sufficient number of the symptoms they give it the title of CFS, and tell you there is nothing they can do.
What were you expecting treatment-wise out of interest? You speak as though you should have a clearer diagnosis but there is generally a poor understanding in literature about CFS/ME.
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In reply to UKC Articles:
Charley thanks for sharing this very inspiring story to mark ME Awareness week.You have found a passion in your life and it sounds like when you climb you completely re-connect with your unconscious instinctive emotions of joy and fulfilment.No wonder your symptoms reduce in those moments !
As a Mickel Therapist I support and guide people with ME to resolve their symptoms via Skype and face to face.
In support of ME Awareness Week I am offering free sessions but I am so inspired by your story that I would be pleased to offer you a complete treatment program free of charge.
It's a very different approach and requires an open mind and resilience !
www.facebook.com/janesinclairmickel/
Charley thanks for sharing this very inspiring story to mark ME Awareness week.You have found a passion in your life and it sounds like when you climb you completely re-connect with your unconscious instinctive emotions of joy and fulfilment.No wonder your symptoms reduce in those moments !
As a Mickel Therapist I support and guide people with ME to resolve their symptoms via Skype and face to face.
In support of ME Awareness Week I am offering free sessions but I am so inspired by your story that I would be pleased to offer you a complete treatment program free of charge.
It's a very different approach and requires an open mind and resilience !
www.facebook.com/janesinclairmickel/
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In reply to Jane Sinclair:
All my stresses just melt away when I'm climbing, so I can really identify with this!
All my stresses just melt away when I'm climbing, so I can really identify with this!
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In reply to switch:
Really interesting. I had no idea of how completely different the two are.
> Interesting table here for comparison between ME and CFS (it's a bit ranty):
> www.hfme.org/comparisonchart.htm
> www.hfme.org/comparisonchart.htm
Really interesting. I had no idea of how completely different the two are.
In reply to stp: I'm not sure that the distinction is widely accepted.
IMO it's only useful if there's a difference in treatment or outcomes; e.g. use treatment/strategy x on ME but no point on CFS as it doesn't work on them.
IMO it's only useful if there's a difference in treatment or outcomes; e.g. use treatment/strategy x on ME but no point on CFS as it doesn't work on them.
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In reply to stp:
Yeah I'd ignore that website altogether personally as it's bias and misleading. The front page says for example says 'A diagnosis of 'CFS' is always a misdiagnosis', and that 'CFS' is a bogus disease category created for the benefit of vested interest groups', which is hardly what the peer-reviewed literature states.
Yeah I'd ignore that website altogether personally as it's bias and misleading. The front page says for example says 'A diagnosis of 'CFS' is always a misdiagnosis', and that 'CFS' is a bogus disease category created for the benefit of vested interest groups', which is hardly what the peer-reviewed literature states.
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In reply to Mr. Lee: You get a lot of funny reactions, etc. in the CFS/ME community (proviso to the points below - or at least you used to), for example...
1. Why are there several CFS/ME charities - if they've all got similar aims then shouldn't they logically merge.
2. Why aren't any of the charities doing exit surveys to find out why people have stopped being members - presumably it's because they're now better - if so, why not ask them why they think they got better. This would produce useful data on which treatments etc. were likely to be useful - seems like an obvious thing to do.
3. To me it always seemed as if the CFS/ME charities were trying to alleviate the suffering of people with CFS/ME but not really interested in finding a cure or effective treatment - which would ultimately lead to the charity disappearing due to lack of members (being cynical here).
4. Abuse on forums if you gave even the tiniest suggestion that CFS/ME had a psychological component "it's a real disease". Yes I know it is but the abuse my wife got on Foggy Friends after posting how LP made her better was shocking.
- LP posits that CFS/ME is due to the brain producing too much of some hormones (principally adrenalin) when you use certain neural pathways (i.e. when you think in certain ways, certain thoughts) - so it trains you to stop thinking those thoughts so that you don't use those neural pathways which are "replaced" with neural pathways that don't produce the undesired hormones.
- immediate abuse about daring to suggest that CFS/ME might contain a psychological component.
- statements such as "if you got better from LP then you didn't really have CFS/ME".
- to which my response would be - who cares what my wife had she's better now, and if LP made 30% or 50% or 70% of the sufferers better but that showed that they didn't really have CFS/ME then who cares - it would still have made them better from their real suffering.
5. It certainly seemed that some people were more bothered about having the correct illness labels attached than getting better. They'd become institutionalised by their illness and appeared to be scared about leaving that state and returning to the well (or at lease significantly "weller") world.
1. Why are there several CFS/ME charities - if they've all got similar aims then shouldn't they logically merge.
2. Why aren't any of the charities doing exit surveys to find out why people have stopped being members - presumably it's because they're now better - if so, why not ask them why they think they got better. This would produce useful data on which treatments etc. were likely to be useful - seems like an obvious thing to do.
3. To me it always seemed as if the CFS/ME charities were trying to alleviate the suffering of people with CFS/ME but not really interested in finding a cure or effective treatment - which would ultimately lead to the charity disappearing due to lack of members (being cynical here).
4. Abuse on forums if you gave even the tiniest suggestion that CFS/ME had a psychological component "it's a real disease". Yes I know it is but the abuse my wife got on Foggy Friends after posting how LP made her better was shocking.
- LP posits that CFS/ME is due to the brain producing too much of some hormones (principally adrenalin) when you use certain neural pathways (i.e. when you think in certain ways, certain thoughts) - so it trains you to stop thinking those thoughts so that you don't use those neural pathways which are "replaced" with neural pathways that don't produce the undesired hormones.
- immediate abuse about daring to suggest that CFS/ME might contain a psychological component.
- statements such as "if you got better from LP then you didn't really have CFS/ME".
- to which my response would be - who cares what my wife had she's better now, and if LP made 30% or 50% or 70% of the sufferers better but that showed that they didn't really have CFS/ME then who cares - it would still have made them better from their real suffering.
5. It certainly seemed that some people were more bothered about having the correct illness labels attached than getting better. They'd become institutionalised by their illness and appeared to be scared about leaving that state and returning to the well (or at lease significantly "weller") world.
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In reply to Michael Hood:
Just read this BMJ article from 2011, which seems to tie in with some of the above website's objectives to "oppose false and meaningless disease categories such as ‘CFS,’ ‘CFIDS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘ME-CFS’ and Myalgic ‘Encephalopathy" (quoted from the website's aims).
http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Dangers%20of%20rese...
Regarding the Lightning Process, I'm struggling to take it seriously unfortunately until someone can write a half-decent paper showing some sort of outcome measures. Until then it's as evidence-based as homoeopathy. The only paper I've found on it is honestly the worst designed paper I've ever read. The people providing the training undertook semi-structured interviews with participants after the course and that was the paper. No blinding, no meaningful outcomes, directly sponsored, and no placebo or comparative group. Essentially every rule broken.
http://www.ncbi.nlm.nih.gov/pubmed/?term=Experiences+of+young+people+who+ha...
Glad your wife is better though and I don't mean to be confrontational. I just want some proper evidence. Even a standardised questionnaire would be a start. It's probably fairly easy to create a control group as well, given a lot of people receive no 'treatment'. Otherwise a comparison of outcomes with CBT would also give some sort of validation.
Just read this BMJ article from 2011, which seems to tie in with some of the above website's objectives to "oppose false and meaningless disease categories such as ‘CFS,’ ‘CFIDS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘ME-CFS’ and Myalgic ‘Encephalopathy" (quoted from the website's aims).
http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Dangers%20of%20rese...
Regarding the Lightning Process, I'm struggling to take it seriously unfortunately until someone can write a half-decent paper showing some sort of outcome measures. Until then it's as evidence-based as homoeopathy. The only paper I've found on it is honestly the worst designed paper I've ever read. The people providing the training undertook semi-structured interviews with participants after the course and that was the paper. No blinding, no meaningful outcomes, directly sponsored, and no placebo or comparative group. Essentially every rule broken.
http://www.ncbi.nlm.nih.gov/pubmed/?term=Experiences+of+young+people+who+ha...
Glad your wife is better though and I don't mean to be confrontational. I just want some proper evidence. Even a standardised questionnaire would be a start. It's probably fairly easy to create a control group as well, given a lot of people receive no 'treatment'. Otherwise a comparison of outcomes with CBT would also give some sort of validation.
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In reply to Mr. Lee:
That BMJ article is shocking but doesn't totally surprise me.
Re: LP - the BMJ article mentions some difficulty getting decent research done on it without being abused. Phil Parker (creator of LP) might welcome relevant research but he doesn't need it to be done - he knows it works.
We know approx 30 people who have had CFS/ME and undergone LP. Of those, only one didn't make significant improvement in their condition and she subsequently found out she had a completely different condition. Many of these 30 did LP after speaking to my wife (people have contacted her after finding out that she had recovered via friends of friends etc.) but others she has spoken to have decided not to try LP. She's always happy to speak to people about her experience with LP.
I have a suspicion that the type of person who decides to do LP is the type of person who LP will help; i.e. it's self selecting to an extent. So the true success rate on a totally random sample might be lower.
One good thing about LP is that although it's not cheap - £700 seems about the minimum - it's not open ended - it's one off - unlike some treatments "10 sessions then we'll see what you still need" open ended type costs.
I know the "evidence" is anecdotal, but as a confirmed cynic I've seen the rapid improvement myself so I know that my wife and daughter got better because of LP. Even if I was told that it was purely a placebo effect (which I don't think it was) it was money well spent.
That BMJ article is shocking but doesn't totally surprise me.
Re: LP - the BMJ article mentions some difficulty getting decent research done on it without being abused. Phil Parker (creator of LP) might welcome relevant research but he doesn't need it to be done - he knows it works.
We know approx 30 people who have had CFS/ME and undergone LP. Of those, only one didn't make significant improvement in their condition and she subsequently found out she had a completely different condition. Many of these 30 did LP after speaking to my wife (people have contacted her after finding out that she had recovered via friends of friends etc.) but others she has spoken to have decided not to try LP. She's always happy to speak to people about her experience with LP.
I have a suspicion that the type of person who decides to do LP is the type of person who LP will help; i.e. it's self selecting to an extent. So the true success rate on a totally random sample might be lower.
One good thing about LP is that although it's not cheap - £700 seems about the minimum - it's not open ended - it's one off - unlike some treatments "10 sessions then we'll see what you still need" open ended type costs.
I know the "evidence" is anecdotal, but as a confirmed cynic I've seen the rapid improvement myself so I know that my wife and daughter got better because of LP. Even if I was told that it was purely a placebo effect (which I don't think it was) it was money well spent.
Post edited at 23:16
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In reply to UKC Articles:
Really enjoyed the article, thanks. It's nice to see something that explains ME well and is positive too. I've had it for 3 1/2 years following a virus (I used to post on here a bit before I got ill, and occasionally when I first became unwell, but it became too painful to come on here and see what I'm missing out on - a flight of stairs is enough of a climbing challenge for me at the moment, although I've found other things that i can do to make life as interesting and enjoyable as it can be.)
I wonder if the author would mind sharing any other details of things he feels have helped his recovery to this level of activity?
Cat
Really enjoyed the article, thanks. It's nice to see something that explains ME well and is positive too. I've had it for 3 1/2 years following a virus (I used to post on here a bit before I got ill, and occasionally when I first became unwell, but it became too painful to come on here and see what I'm missing out on - a flight of stairs is enough of a climbing challenge for me at the moment, although I've found other things that i can do to make life as interesting and enjoyable as it can be.)
I wonder if the author would mind sharing any other details of things he feels have helped his recovery to this level of activity?
Cat
1
In reply to Mr. Lee:
Hi
You asked what treatment I was expecting. It is not that I had an expectation of any particular treatment. But it would have been nice if the medical profession had wanted to try to help me at least improve.
My moan is that the approach is
- we can't find anything specific so we'll stop looking
- it fits this vague definition i.e 8 from this list of 12, therefore it must be CFS
- Therefore there is nothing we can do. To quote the doctor " there is no pill for it, so nothing I can do". It was made clear that he meant don't bother me by making another appointment. This was at only my second appointment so I hadn't exactly become a nuisance!
I am not one to just accept powerlessness. So I started reading the research that had been done and what had worked for some people, and trying various dietry approaches, supplementation, qi gung, chiropractor etc. But there was no interest from the pharmaceutical orientated NHS primary care. I think health and therefore the NHS should be about more than pills.
I have improved, although I still have frequent relapses (frustratingly often triggered by walking or climbing or other things I like doing). But it's not thanks to any help from doctors and the NHS.
As someone else on this thread has said I don't often come on here any more, because I can't climb very often so prefer not to think about it so much.
Hi
You asked what treatment I was expecting. It is not that I had an expectation of any particular treatment. But it would have been nice if the medical profession had wanted to try to help me at least improve.
My moan is that the approach is
- we can't find anything specific so we'll stop looking
- it fits this vague definition i.e 8 from this list of 12, therefore it must be CFS
- Therefore there is nothing we can do. To quote the doctor " there is no pill for it, so nothing I can do". It was made clear that he meant don't bother me by making another appointment. This was at only my second appointment so I hadn't exactly become a nuisance!
I am not one to just accept powerlessness. So I started reading the research that had been done and what had worked for some people, and trying various dietry approaches, supplementation, qi gung, chiropractor etc. But there was no interest from the pharmaceutical orientated NHS primary care. I think health and therefore the NHS should be about more than pills.
I have improved, although I still have frequent relapses (frustratingly often triggered by walking or climbing or other things I like doing). But it's not thanks to any help from doctors and the NHS.
As someone else on this thread has said I don't often come on here any more, because I can't climb very often so prefer not to think about it so much.
1
In reply to UKC Articles:
Really interesting article and an impressive level of gumption, fair play to that chap.
I have something called Haemochromatosis, which untreated has similar symptoms to start with so I can understand the thing about people not understanding that just because you look fairly 'normal' you are actually in less than optimal condition. Getting back into climbing now and it's a really positive experience.
Really interesting article and an impressive level of gumption, fair play to that chap.
I have something called Haemochromatosis, which untreated has similar symptoms to start with so I can understand the thing about people not understanding that just because you look fairly 'normal' you are actually in less than optimal condition. Getting back into climbing now and it's a really positive experience.
In reply to UKC Articles:
Here's one to throw the whole CFS/ME thing up in the air again:
I was diagnosed with ME/CFS in 2007 ish, spent nearly a year off work and subsequently back only part time. Significant physical tiredness and reduced capacity for exercise/ protracted recovery periods after trivial activity , but mostly extreme mental lethargy. The latter has been persistent but variable.
5 years later, over a four month period, I managed a walk over the British 3000's . Mentally still sluggish after, but physical endurance much improved. I still live with the symptoms.
I guess it would have been called 'burnout' in the old days.
I attended a CFS management course run by the NHS in the year after diagnosis. There were a lot of perfectionist personalities in the group, and a spectrum of beliefs on display: Some took some of the self management advice to mean 'They're telling me it's all in my head'. Generally such personalities were stuck in their frustrations, unable to accept that there are no definitive tests for the condition, with perhaps a tendency (unspoken) to 'cure seeking'. Yes, you could say we were all lumped together, even though the nature, extent, and probably cause of our symptoms varied. Often, the ones that expended a lot of energy describing how severe their symptoms were seemed to be the most walled off to reason. Cause or effect?
What I am not saying, is, look at me -I got off my bum and stopped being a wuss- aren't I great?. The message I would offer though is find something physical you can lose yourself in, that does not place massive expectations or load you mentally , and build slowly on that, recognising relapses for what they are. Accept the support of others, even if you're not used to it. We're all stuck a bit, just try not to be too stuck.
Here's one to throw the whole CFS/ME thing up in the air again:
I was diagnosed with ME/CFS in 2007 ish, spent nearly a year off work and subsequently back only part time. Significant physical tiredness and reduced capacity for exercise/ protracted recovery periods after trivial activity , but mostly extreme mental lethargy. The latter has been persistent but variable.
5 years later, over a four month period, I managed a walk over the British 3000's . Mentally still sluggish after, but physical endurance much improved. I still live with the symptoms.
I guess it would have been called 'burnout' in the old days.
I attended a CFS management course run by the NHS in the year after diagnosis. There were a lot of perfectionist personalities in the group, and a spectrum of beliefs on display: Some took some of the self management advice to mean 'They're telling me it's all in my head'. Generally such personalities were stuck in their frustrations, unable to accept that there are no definitive tests for the condition, with perhaps a tendency (unspoken) to 'cure seeking'. Yes, you could say we were all lumped together, even though the nature, extent, and probably cause of our symptoms varied. Often, the ones that expended a lot of energy describing how severe their symptoms were seemed to be the most walled off to reason. Cause or effect?
What I am not saying, is, look at me -I got off my bum and stopped being a wuss- aren't I great?. The message I would offer though is find something physical you can lose yourself in, that does not place massive expectations or load you mentally , and build slowly on that, recognising relapses for what they are. Accept the support of others, even if you're not used to it. We're all stuck a bit, just try not to be too stuck.
3
In reply to llechwedd:
This is good to hear. Although I have had no diagnosis for ME/CFS I've had polymyalgia for the last 10 months interspersed with periods of lethargy and "brain fog" and much of what is written above sounds familiar. I'm currently on a walking programme (starting small, about twenty minutes a day) but knowing others have got back on the rock and into the hills is a real boost. Great article and some good comments.
This is good to hear. Although I have had no diagnosis for ME/CFS I've had polymyalgia for the last 10 months interspersed with periods of lethargy and "brain fog" and much of what is written above sounds familiar. I'm currently on a walking programme (starting small, about twenty minutes a day) but knowing others have got back on the rock and into the hills is a real boost. Great article and some good comments.
1
In reply to llechwedd:
As I've previously mentioned, some people seem more concerned with getting the correct label rather than having an "anything that makes me better or feel better is OK" outlook.
You seem to have the correct attitude, good luck.
As I've previously mentioned, some people seem more concerned with getting the correct label rather than having an "anything that makes me better or feel better is OK" outlook.
You seem to have the correct attitude, good luck.
Post edited at 15:51
1
In reply to broken spectre:
A problem with these 'lethargic' conditions is that the sedentary lifestyle which ensues, promotes poor posture over extended periods - and the aches and pains that then follow. This potentially manageable aspect of conditions like ME and Polymyalgia often goes unrecognised.
Whereas someone on e.g a long haul flight would rightly ascribe the resulting aches when they subsequently move to biomechanical stress, a person with CFS/ME is perhaps more likely to see it as another manifestation of their condition- which, in a way, it is, but brought about by extended static posture secondary to the unexplained bit. But someone caught up in the unexplained syndrome thing will possibly see it as some other thing for which there is no cure, rather than something they could explore.
Attending to the small things like this has the potential to enhance a person's sense of self efficacy. Perhaps some don't attend to this because their aspirations are so much more advanced, and e.g. taking a break from the computer seems a trifling matter. Alongside the person not helping themself, there are the well intentioned who might cruelly misconstrue this advice, and interpret it as meaning that graded exercise is all you need, and then 'you'll snap out of this made up condition'.
Good to hear you're getting out. It worked for me.
A problem with these 'lethargic' conditions is that the sedentary lifestyle which ensues, promotes poor posture over extended periods - and the aches and pains that then follow. This potentially manageable aspect of conditions like ME and Polymyalgia often goes unrecognised.
Whereas someone on e.g a long haul flight would rightly ascribe the resulting aches when they subsequently move to biomechanical stress, a person with CFS/ME is perhaps more likely to see it as another manifestation of their condition- which, in a way, it is, but brought about by extended static posture secondary to the unexplained bit. But someone caught up in the unexplained syndrome thing will possibly see it as some other thing for which there is no cure, rather than something they could explore.
Attending to the small things like this has the potential to enhance a person's sense of self efficacy. Perhaps some don't attend to this because their aspirations are so much more advanced, and e.g. taking a break from the computer seems a trifling matter. Alongside the person not helping themself, there are the well intentioned who might cruelly misconstrue this advice, and interpret it as meaning that graded exercise is all you need, and then 'you'll snap out of this made up condition'.
Good to hear you're getting out. It worked for me.
2
1
In reply to UKC Articles:
Great article, thanks for writing Charley, glad you find climbing benefits you! Can't believe I missed this article when it came out!
I fell desperately ill aged 33 with "post viral fatigue" syndrome / CFS / M.E., in 1998, though I've now been well for about 10 years, it was a very bad time and I could not work at all, nor go out, socialise, even watch TV or read books. As I tried to climb , years into "recovery", I found the mental stress on top of the physical triggered relapses, so climbing had to wait a while for me.
I very quickly spoke to Matt Birch, the V14 boulderer with M.E. at the time, as he's good friends with my sister & bro-in law. As soon as he heard when as happening to me he was on the phone offering advice & help - really good of him. He explained he could boulder hard but would then be "fogged" and wrecked for days......
Re. the Lightning Process, it's a difficult one, as it certainly seems to help some sufferers yet others remain very unwell, eg. a friend of mine, who has since died, had severe ME for 20 years and threw everything at it - she certainly wanted recovery more than anyone I ever knew, and to the end always believed she would recover - yet she paid a lot of £££ for the LP and tried so hard to make it work; watching her slip away as its benefits failed her was heartbreaking; yet the therapist was almost shouting at her to "Do the process!" - ie. patient blaming for failure of therapy. I'm glad it helps some people but I would like to see more evidence, eg. proper clinical trials.
I believe that in the US, where more biological research is taking place, they have identified at least nine different subgroups (or "phenotypes"?) of CFS/ME. So research & studies on people umbrella'd under the "CFS" blanket are unlikely to "prove" any treatment - which is why, sadly, the emphasis on treatment seems to be addressing how to cope with behavioural change etc - which the more "touchy" hardcore of M.E. sufferers believe to be a message that people think it's "all in their minds" or a mental condition; they're not, & it isn't.
I am on the books of Action for ME (Bristol based charity) as a recovery story; I've been on the local radio several times, and during my recovery I worked voluntarily as a telephone support worker, helping over 300 sufferers with support & advice, so I'm no punter on this subject. As a newly- successful runner, orienteer, and budding Alpinist (so hard that one! It is the only thing that can bring back my CFS/ME symptoms), I believe that some people will not get better through no fault of their own, but because they have a subgroup with a worse outcome. I think I got "lucky", as I "merely" had a severe acute onset post viral fatigue syndrome. It seemed to be (with good self management and a decade's patience) a "self correcting" kind of illness. It took ages, but I got there; and relapses are just part of the "journey".
I tried a whole raft of treatments & remedies, & some helped, they're here if anyone's interested, along with my story.
http://www.murrayphil.pwp.blueyonder.co.uk/remedy.html
http://www.murrayphil.pwp.blueyonder.co.uk/pvfs.htm
Phil
Great article, thanks for writing Charley, glad you find climbing benefits you! Can't believe I missed this article when it came out!
I fell desperately ill aged 33 with "post viral fatigue" syndrome / CFS / M.E., in 1998, though I've now been well for about 10 years, it was a very bad time and I could not work at all, nor go out, socialise, even watch TV or read books. As I tried to climb , years into "recovery", I found the mental stress on top of the physical triggered relapses, so climbing had to wait a while for me.
I very quickly spoke to Matt Birch, the V14 boulderer with M.E. at the time, as he's good friends with my sister & bro-in law. As soon as he heard when as happening to me he was on the phone offering advice & help - really good of him. He explained he could boulder hard but would then be "fogged" and wrecked for days......
Re. the Lightning Process, it's a difficult one, as it certainly seems to help some sufferers yet others remain very unwell, eg. a friend of mine, who has since died, had severe ME for 20 years and threw everything at it - she certainly wanted recovery more than anyone I ever knew, and to the end always believed she would recover - yet she paid a lot of £££ for the LP and tried so hard to make it work; watching her slip away as its benefits failed her was heartbreaking; yet the therapist was almost shouting at her to "Do the process!" - ie. patient blaming for failure of therapy. I'm glad it helps some people but I would like to see more evidence, eg. proper clinical trials.
I believe that in the US, where more biological research is taking place, they have identified at least nine different subgroups (or "phenotypes"?) of CFS/ME. So research & studies on people umbrella'd under the "CFS" blanket are unlikely to "prove" any treatment - which is why, sadly, the emphasis on treatment seems to be addressing how to cope with behavioural change etc - which the more "touchy" hardcore of M.E. sufferers believe to be a message that people think it's "all in their minds" or a mental condition; they're not, & it isn't.
I am on the books of Action for ME (Bristol based charity) as a recovery story; I've been on the local radio several times, and during my recovery I worked voluntarily as a telephone support worker, helping over 300 sufferers with support & advice, so I'm no punter on this subject. As a newly- successful runner, orienteer, and budding Alpinist (so hard that one! It is the only thing that can bring back my CFS/ME symptoms), I believe that some people will not get better through no fault of their own, but because they have a subgroup with a worse outcome. I think I got "lucky", as I "merely" had a severe acute onset post viral fatigue syndrome. It seemed to be (with good self management and a decade's patience) a "self correcting" kind of illness. It took ages, but I got there; and relapses are just part of the "journey".
I tried a whole raft of treatments & remedies, & some helped, they're here if anyone's interested, along with my story.
http://www.murrayphil.pwp.blueyonder.co.uk/remedy.html
http://www.murrayphil.pwp.blueyonder.co.uk/pvfs.htm
Phil
5
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