Is there any evidence that deconditioning alone causes pain and fatigue?

[oceanblue]

'Deconditioning: Loss of physical fitness as the general physiological response to, for example, a prolonged period of inactivity.'. . .

Hi Firestormm

Lots of really interesting points there, though I'm afraid I lost the thread a bit at times so excuse me if I've misunderstood bits.

Re Deconditioning, Exercise and Graded Activity
Thanks, those definitions look good to me too. Hope you'll be posting the fruits of your work on NICE guidelines etc.

Now in the trials that relate to GET (which aims to address physical deconditioning of course) there does seem to be something of a dichotomy - we seem to move from 'any form of daily activity' (something that I think is relative to the state of our condition at any particular time and sounds more sensible/realistic) to specific 'physical exercise' as used in these research papers e.g. the six minute walking test. I don't know. I just would like to see something more realistic studied, you know? A more real-life situation.

And it occurs to me, now, that they might have greater success if they looked at Graded Activity than Graded Exercise - if the former also included mental activities pertaining to cognitive function.

I think in PACE GET they may have allowed some activity rather than exercise eg housework (which can be aerobic) but there was some confusion over whether this was genuine incremental activity or just counting pre-existing activity towards 'progress'. However, the medium term goals for GET definitely included aerobic exercise, ideally up to 30 minutes vigorous exercise 3x a week, IIRC. And I agree they would probably get better results focusing on all activity, including mental exertion.

Btw, the 6MWT was simply a test to measure progress, not part of the GET regime itself - though walking often was.

2 & 3. Indeed. I mean you should have a baseline for comparison and a sedentary - but healthy person - would do. Although I guess you could compare to someone who is entirely dependent upon others for all forms of physical function and who is unable to function mentally.

Sorry, not sure exactly what your current levels are. But one thing that surprised me when I was severely affected and went for respite was the energy levels, particularly mental energy levels, of other people there. Most of them had advanced MS or other neurological conditions and were severely incapacitated; some could propel their own wheelchair, most could not. Yet, despite having to cope with huge problems, they were in some ways able to do much more than me e.g they could watch a film or go out to a pub. They probably spent similar times in bed and sitting to me (I was unusual in that I could sometimes walk a little and propel a wheelchair) so should have been deconditioned too, perhaps more than me. But it didn't seem to create the same level of problems with fatigue and energy.

...I do wonder if all this 'deconditioning' doesn't originate in the sports arena or even in the military. You know following physical injury? Then again I suppose it is just as likely to have originated in the medical rehabilitation field, it's what physiotherapists try to achieve after-all isn't it? But applying a physical injury model to ME is not necessarily the most appropriate. However, it is applied to just about all forms of neurological care, you name the condition and physio's or Occupational Health will be involved - and not always detrimentally either. It's the model they've always known isn't it? ...

The same respite centre also undertook rehabilitation of people with neurological damage, eg from head injuries after a car crash. Patients such had often become very deconditioned after long stays in intensive care, or in comas. The interesting thing here was that they used a very structured and fairly intense rehabilitation programme to recover fitness, and function where possible. Although some of the people responsible for my care there had fairly standard views about ME, they did at least acknowledge that that kind of programme clearly wouldn't work in my case, though they had considered it in the beginning.

Measuring Deconditioning and Fatigue
There does seem to be agreement on measuring deconditioning, or at least a lack of fitness: VO2 max levels on a treadmill or cycle. As I mentioned in earlier posts, when CFS patients in 2 graded exercise trials has VO2max at baseline measured, they were not deconditioned. The Fulcher study that also measured VO2max after GET found a modest 13% improvement - but crucially it didn't correlate with overall improvement.

I don't have problems with the principle of using questionnaires to measure purely subjective symptoms like fatigue (is there another way?) but activity is different as there are more objective alternatives eg actometers, though these are not perfect either.

There is a reason why such things as the Chalder Fatigue Scale are not improved or even reviewed - tradition. Plus I suppose if you were to seek an improvement you would have difficulty comparing to past studies.

I'm not impressed by the Chalder scale either. According to Simon Wessely it was initially a list of questions cobbled together cos he thought they were plausible... Lenny Jason has/is doing some interesting work on fatigue questions that are more specific to our illness eg focusing on fatigue in relation to exertion. Results to date suggest it is very effective at discriminating between CFS patients and those with depression, who also suffer from fatigue. A larger study is under way.

 

[Firestormm]

Gonna grab some zzz's Ocean. I'll be back he, he, he

 

[oceanblue]

I have a neuromuscular disorder that causes muscle fatigue.

As for a long time it was "unexplained" I had numerous tests. One was a cardio-pulmonary exercise test a few years ago.

At the time I had that test, I still managed (somehow) to work full time, do rounds and even walk up a flight of steps, during my better periods. ...After a very short period (which to me felt like hours of cycling uphill) the pulmonologist told me to stop. He had to carry me to the examination bed as I could no longer walk on my own, and it took me nearly an hour to recover. My VO2 max was 7.3....

... I was very fortunate soon after to reach an amazing neurologist who told me that I should always do a little less than I think I am capable of... After more than a year in which I avoided any type of physical exercise meant to improve my strength and endurance and use my muscles in the minimum amount required, I am slowly becoming stronger and have more endurance.

It doesn't surprise me that there are other patients who like me only get worse with physical exertion. It also doesn't surprise me that the medical community finds it hard to understand this, if my training made it hard for me to understand what was happening to my own body.

Studies published in the medical literature are an excellent map, but they are not the terrain. Therefore if you see a pond of water it is there, even if it not marked on your map.

There is enough evidence that a minority of people do not benefit from exercise, but the exact opposite.
It does not and should not change the recommendation for exercise for most of the population. It should change the "all".

Thanks, Don Q for all those insights. Your VO2max was extraordinarily low - from studies I've seen, VO2 is usually around 5-6 for resting indiviudals vs 30-ish for VO2 max.

I particularly like your map vs terrain analogy, which chimes with my experience with some of those who treated me. They are so sure their map describes everything they ignore what's in front of them and pretend the lake is not there.

 

[Don Quichotte]

I know it was very low.
What kept on confusing them was that I had a near normal muscle strength when resting, which rapidly deteriorated upon the most minimal exertion.
I would become extremely short of breath during a routine neurological examination, but once they let me rest and recover I could push their arm with near normal force. so, their conclusion was that I had a normal neurological examination but was very "anxious".
Only one rehab physician asked me why I was putting so much efforts into pushing his arm until I crash. But, he too was later confused by my normal appearance (at rest, sitting on my armchair and working on my lap-top) that he decided I was "depressed".
During one of my hospitalizations they couldn't understand how one examiner would get normal muscle strength and another a short time later would find severe muscle weakness. Or how my vital capacity could go from 4.5 to 1.5 or even less. Their way of dealing with it was to put a big ?! on the results of the second test and decide that this was because of my "depression? anxiety" and "not putting enough efforts".

They thought of every possible explanation, except for the fact that there was a very small margin between my oxygen consumption at rest and during physical activity due to an illness they could not fully understand.

I have to admit that until now (when you mentioned the resting VO2) I haven't thought of this simple explanation myself. I just knew that I had a very low VO2 max. (less than 30% of predicted) that got my pulmonologist who also happened to be a sport's physician very concerned (but didn't interest any other physician involved in my care and I thought he was just comparing me to the marathon runners he trains) and that I had those "crazy" and hard to explain fluctuations.

I believe that my resting VO2 is also lower than normal as my resting CO2 is very low .

 

[oceanblue]

I know it was very low.
I would become extremely short of breath during a routine neurological examination, but once they let me rest and recover I could push their arm with near normal force. so, their conclusion was that I had a normal neurological examination but was very "anxious".

Only one rehab physician asked me why I was putting so much efforts into pushing his arm until I crash. But, he too was later confused by my normal appearance (at rest, sitting on my armchair and working on my lap-top) that he decided I was "depressed".

...They thought of every possible explanation, except for the fact that there was a very small margin between my oxygen consumption at rest and during physical activity due to an illness they could not fully understand.

Inexplicable physical problems that only made sense by invoking depression and anxiety? I assume they diagnosed you with CFS.

 

[Firestormm]

Hi Firestormm

Lots of really interesting points there, though I'm afraid I lost the thread a bit at times so excuse me if I've misunderstood bits.

Lol. That's a given with me these days Ocean. My thoughts - unless edited beforehand - tend to lose their 'flow'

Re Deconditioning, Exercise and Graded Activity
Thanks, those definitions look good to me too. Hope you'll be posting the fruits of your work on NICE guidelines etc.

I'm afraid that one of the reasons I have been so relatively quiet on forums recently is that we've been embroiled in a local fight to maintain funding and improve the ME service. None of it has been easy, and the latest offering from the Hospital Trust will see the ME service (what remains of it) incorporated into a 'Complex Conditions' model, largely dependent upon liaison psychiatry, and alongside the pain management clinic. So my 'work' with the various Guidelines etc. are an attempt to try and at least ensure they honour their commitments to establishing a clearly defined service that employs medical clinicians and doesn't solely go down the psychology route. I also object to ME being considered a 'complex condition'.

I'll briefly explain why. Under the Guidelines and the contributing papers, ME is a neurological condition, diagnosed with a relatively simple set of criteria. Hell, even 'treatment' is relatively straightforward. 'Complex'? No. Not in this context. I've been working closely with those who provide services for other neurological conditions and together we are trying to 'persuade' the new commissioning group, that they way in which they deal with ME should be no different to that of any other said condition... anyway...

Only so much I and others are capable of doing of course even being patients. Meeting with the new GP commissioning body at the end of August, so I'm trying to pace it but I don't do myself any favours.

I think in PACE GET they may have allowed some activity rather than exercise eg housework (which can be aerobic) but there was some confusion over whether this was genuine incremental activity or just counting pre-existing activity towards 'progress'. However, the medium term goals for GET definitely included aerobic exercise, ideally up to 30 minutes vigorous exercise 3x a week, IIRC. And I agree they would probably get better results focusing on all activity, including mental exertion.

Btw, the 6MWT was simply a test to measure progress, not part of the GET regime itself - though walking often was.

Thanks. I had not remembered that. Once I set something aside - it's gone and takes forever to refresh to old grey cell

Sorry, not sure exactly what your current levels are. But one thing that surprised me when I was severely affected and went for respite was the energy levels, particularly mental energy levels, of other people there. Most of them had advanced MS or other neurological conditions and were severely incapacitated; some could propel their own wheelchair, most could not. Yet, despite having to cope with huge problems, they were in some ways able to do much more than me e.g they could watch a film or go out to a pub. They probably spent similar times in bed and sitting to me (I was unusual in that I could sometimes walk a little and propel a wheelchair) so should have been deconditioned too, perhaps more than me. But it didn't seem to create the same level of problems with fatigue and energy.

Always difficult to try and define where I might 'fit' on any scale. I think it reasonable to say I am less than severe but spend 90% of my time 'housebound' and generally I can now 'function' within a three hour window each day I suppose. Mobility generally has been less of an issue with me than with some. I've never been confined to a wheelchair for example but have limited my needs accordingly, because, well I could. I think that as my working life has meant I needed a fully functioning head on my shoulders - it is the cognitively challenging aspects of the condition that have blown me out of the water more than the mobility concerns.

I had to move back in with my parents four years back, and so am well supported and as a consequence I can 'afford' to manage the condition as well as possible. External pressures really are kept to a minimum (when compared to what some others I read of have to endure). And I was pensioned-off by my career employer some ten years ago now, so financially - whilst tight - I am certainly not subject to the pressure in this regard as others either.

That said, my brushes with the benefit system have resulted in two appeal 'wins'. The last for Disability Living Allowance. Before I continue with a complete C.V. I'll put a sock in it - wouldn't want you to vent you ire against ex-Private Bankers!

The same respite centre also undertook rehabilitation of people with neurological damage, eg from head injuries after a car crash. Patients such had often become very deconditioned after long stays in intensive care, or in comas. The interesting thing here was that they used a very structured and fairly intense rehabilitation programme to recover fitness, and function where possible. Although some of the people responsible for my care there had fairly standard views about ME, they did at least acknowledge that that kind of programme clearly wouldn't work in my case, though they had considered it in the beginning.

I had not - in my previous comment - considered overly much that the same term might indeed be applied to brain injury and coma in regard to their physical deconditioning. Of course in that respect - as with e.g. stroke - you are (as with a child) trying to teach (re-teach) the brain how to best make use of physical abilities be they to control motor-skills (or for speech) along with strengthening unused muscles etc.

Here's a question though: how do you know just how much you can teach someone/what to expect from someone who has suffered brain injury, or come back from a coma, or had a stroke? I would tentatively suggest that this is at least in part based on medical understanding of the extent of the injury, of the damage done (so to speak), but with any damage to the brain you just keep on trying I suppose until, well until those personal goals are achieved perhaps?

So how then is such a 'model' of thinking applied to something like ME? Here's a thought: they just keep trying. Keep pushing. Keep encouraging. And keep trying with the same 'treatments' that they themselves have been conditioned to use. And for the professionals that are unprofessional - and as happens with other conditions/patients outside of the ME-world - if a patient doesn't perform as expected, does not re-condition, they tend to blame the patient (in essence) or write their efforts off as being incompatible with the extent of the injury or illness.

Here's another thought: if you don't understand the model for an illness, what can you/should you do? There is an inherent human need to 'do' something (added to that, professionals etc. need employment!). And if, as patients, we feel that something 'helps', this anecdotal evidence is by and large the only evidence needed. What's the alternative? To leave patients bereft of all care. Not something that anyone would want to see. And whilst interventions are afforded short-thrift on forums in the main, because they don't in general appear to address the underlying condition - so long as patients continue to report them 'helping' (perhaps from a holistic point of view) they'll continue to be used. And we can always say 'No'

I have sat with patients in dire need of help who suffer badly with MS. Watching them undergo treatment by physiotherapists. I have seen and heard of how the treatments hurts and leaves them exhausted for days afterwards - but they keep coming back. Why? Is it hope? Similarly, I have spoken to people with the same condition who have been able to leave their wheelchairs and walk again. Not all the time but more than they could before. Yes. I know. A few stories. So what? And I only mention MS because I was reading Dolphin's thread earlier about the Newton studies I think you commented upon, and in which was mentioned MS and how patients had responded to graded activity. Plus I was helping a local charity and working from an office in an MS rehabilitation and support centre for a while last year. Anyway...

Measuring Deconditioning and Fatigue
There does seem to be agreement on measuring deconditioning, or at least a lack of fitness: VO2 max levels on a treadmill or cycle. As I mentioned in earlier posts, when CFS patients in 2 graded exercise trials has VO2max at baseline measured, they were not deconditioned. The Fulcher study that also measured VO2max after GET found a modest 13% improvement - but crucially it didn't correlate with overall improvement.

I don't have problems with the principle of using questionnaires to measure purely subjective symptoms like fatigue (is there another way?) but activity is different as there are more objective alternatives eg actometers, though these are not perfect either.I'm not impressed by the Chalder scale either. According to Simon Wessely it was initially a list of questions cobbled together cos he thought they were plausible... Lenny Jason has/is doing some interesting work on fatigue questions that are more specific to our illness eg focusing on fatigue in relation to exertion. Results to date suggest it is very effective at discriminating between CFS patients and those with depression, who also suffer from fatigue. A larger study is under way.

Here's another example then of how measures employed in a research study are not (perhaps) employed in the trenches as it were. Far more reliance on the ground with visual observations and listening/reacting to what a patient says I would suggest.

Sometimes I read these research studies and listen to patients (I think largely from the USA) and I think, where the heck do all these measures come from? I guess what I'm really thinking is - why haven't these measures ever been used on me?

I'd heard that too about the Chalder scale. Small acorns I suppose. We are hoping I expect that if 'fatigue' is ever understood as a biological process, related to ME, and able to be measured - it can then be objectively tested in some way. Until that time...

I mentioned patients in the USA before. I'm now based in the UK, but even when I wasn't, and despite seeing a great many specialists over the years - some of whom I paid for, some who were covered by insurance, and some (perhaps most) who were a part of the NHS - I have never had any test (blood or observational or questionnaire) broken down to the extent I sometimes see posted on forums.

When reading research papers I am quite simply stunned at the detail that is generated from certain tests. Tests I may have had myself but never been furnished with as much information. I know I digress, but I have to hope that the tests and measures that I have been subjected to over the past 16 years of various (possibly connected) illness, that the results did not warrant comment beyond a conclusion.

If there is a point to any of that, it is this - perhaps the detail of test results sometimes appears important but isn't. Not in relation to other things. However, this VO2max does indeed warrant further study I think and employment in studies for 'fatigue'. I shall take a greater interest and go read some more about it.

 

[Don Quichotte]

Inexplicable physical problems that only made sense by invoking depression and anxiety? I assume they diagnosed you with CFS.

No, they preferred more "exotic" diagnoses.

 

[Don Quichotte]

Actually my situation was more complex as I had two "different" diseases-one which was managed by pulmonologists and was a life-threatening neuromuscular disorder requiring respiratory support. The other managed by neurologists and was some ill-defined emotional problem (or those who were more "creative" suggested factitious disorder, anxiety, depression, functional etc.).
The major problem was that the pulmonologists saw their role as technicians, meaning that they did the tests and interpreted them but left the management decisions to the neurologists, as this was not their field of expertise.
Those neurologists would either give me aggressive treatment (which in the best case scenario didn't cause much damage) or shrug their shoulders and explain to me that the pulmonologists don't understand and I should ignore what they say. It took quite a few years and quite a few neurologists to find one with the required clinical skills and common sense. ( I believe that most of them are so trapped in their psychobabble that it makes them blind to see what is clearly in front of their eyes).
I am not sure that had I not been a physician with some knowledge and clinical common sense of my own, I would be alive today.

 

[Firestormm]

Are we as patients more 'complex' in our needs then than others with a long term condition? I don't know. Perhaps that's what they are trying to say. It hasn't come across like that though. ME (as it stands) is not a complex condition to diagnose. They might not be able to test specifically for it - but the same applies to a great many things. My own medical needs are more than ME is supposed to be. Plus the longer we are debilitated the greater the chance our 'complex needs' will increase. Bit like a murder I suppose - if you don't solve it within 48 hours you haven't got a chance and it gets placed in the cold case file

 

[oceanblue]

Lol. That's a given with me these days Ocean. My thoughts - unless edited beforehand - tend to lose their 'flow'

You are not alone there.

I'm afraid that one of the reasons I have been so relatively quiet on forums recently is that we've been embroiled in a local fight to maintain funding and improve the ME service. None of it has been easy, and the latest offering from the Hospital Trust will see the ME service (what remains of it) incorporated into a 'Complex Conditions' model, largely dependent upon liaison psychiatry, and alongside the pain management clinic. So my 'work' with the various Guidelines etc. are an attempt to try and at least ensure they honour their commitments to establishing a clearly defined service that employs medical clinicians and doesn't solely go down the psychology route. I also object to ME being considered a 'complex condition'...

I've been working closely with those who provide services for other neurological conditions and together we are trying to 'persuade' the new commissioning group, that they way in which they deal with ME should be no different to that of any other said condition...

Good on you for doing such important work. Good luck. Given you've already got two DLA Appeal wins to your name I fancy your chances against the NHS.

Here's a question though: how do you know just how much you can teach someone/what to expect from someone who has suffered brain injury, or come back from a coma, or had a stroke? I would tentatively suggest that this is at least in part based on medical understanding of the extent of the injury, of the damage done (so to speak), but with any damage to the brain you just keep on trying I suppose until, well until those personal goals are achieved perhaps?

A fair question but all I really know about it the rehabilitation of fitness itself, which tends to be pretty standard, and fast (assuming people can walk etc). My point was that where someone has become deconditioned by long-term immobilisation eg through coma or being in intensive care, reconditioning can be pretty straightforward. Obviously it needs to be tailored to the individual but doesn't seem to run into the same roadblocks that come up in ME.

Firestormm

When reading research papers I am quite simply stunned at the detail that is generated from certain tests. Tests I may have had myself but never been furnished with as much information. I know I digress, but I have to hope that the tests and measures that I have been subjected to over the past 16 years of various (possibly connected) illness, that the results did not warrant comment beyond a conclusion.

Judging by the test results I've seen in published papers, and the lack of reproduction of them, you probably haven't missed out on anything important...

 

[oceanblue]

Actually my situation was more complex as I had two "different" diseases...( I believe that most of them are so trapped in their psychobabble that it makes them blind to see what is clearly in front of their eyes).
I am not sure that had I not been a physician with some knowledge and clinical common sense of my own, I would be alive today.

I've often wondered if things are much easier if a doctor is the patient; not a whole load by the sound of things.

 

[Esther12]

I've often wondered if things are much easier if a doctor is the patient; not a whole load by the sound of things.

"doctors are the worst patients" etc.

There were a couple of books out over the last year about doctor's approaches to medicine for themselves. I've not read either, but from interviews with authors and reviews the gist seemed to be: they really heated being treated like patients, and tended to choose to have fewer treatments for themselves than they'd want for their patients, especially to prolong their lives when there was little quality of life left.

 

[WillowJ]

Actually my situation was more complex as I had two "different" diseases-one which was managed by pulmonologists and was a life-threatening neuromuscular disorder requiring respiratory support. The other managed by neurologists and was some ill-defined emotional problem (or those who were more "creative" suggested factitious disorder, anxiety, depression, functional etc.).
The major problem was that the pulmonologists saw their role as technicians, meaning that they did the tests and interpreted them but left the management decisions to the neurologists, as this was not their field of expertise.
Those neurologists would either give me aggressive treatment (which in the best case scenario didn't cause much damage) or shrug their shoulders and explain to me that the pulmonologists don't understand and I should ignore what they say. It took quite a few years and quite a few neurologists to find one with the required clinical skills and common sense. ( I believe that most of them are so trapped in their psychobabble that it makes them blind to see what is clearly in front of their eyes).
I am not sure that had I not been a physician with some knowledge and clinical common sense of my own, I would be alive today.

maybe we should teach pulmonologists neurology. mine is the same; he can measure what's wrong but not treat it. but I can't find a neurologist who will touch a CFS patient with a 10-foot pole. "go to a more appropriate specialist, such as rheumatology" is the nicest thing I've been told (by a neurology clinic--that was the staff; pretty sure the doc had a different specialty in mind). I'm guessing my charts say something more like your creative suggestions, but I haven't had the energy to check.

 

[Don Quichotte]

I don't think it really matters if you are a physician or not.
When you become ill, you want to know that the people taking care of you have your best interest in mind, respect you as a person, know, understand and respect your wishes and will do everything to cure or you or at least help you find the optimal way to live with your illness.
The difference is that when you are a physician, you know how you treat your own patients. If you are overall happy with the way you practice, you want to receive the same kind of treatment from your physicians. If you are unhappy and frustration, you want something better. You also know the strengths and limitations of the system. So, on the one hand you have more realistic expectations, on the other hand you are not ready to receive less than what you deserve and would have given your own patients under similar circumstances.
So, it is both easier and harder to be a patient, when you are also a physician.
I know that for me, the relationship I had with my own patients helped me in many ways. First, I have learned from them what it means to be ill and it made it easier for me to accept my own normal emotional responses to my own illness; Second, it gave me the hope (and perseverance) to find a team of physicians I could trust, like my patients trust me; Third, their trust in me despite my physical limitations helped me regain my trust in myself.

 

[Firestormm]

If only there was a non-harmful way to have doctors/health care workers be patients for a time, as part of their training perhaps, maybe that would lend them the perspective you have gained, Don.

Having said that, I think this perspective and the empathy that as patients we might expect, does appear to come naturally for some more so than others. Of course we tend sometimes to focus more on the negative examples brought to light than remembering that they really are in the minority.

With ME - from my own perspective - it's this whole 'believability' thing that's been so damn hard to handle. I've had long periods when I didn't believe so how could I expect my doctor's to? All this back-and-forth on forums and in the media between what has been termed 'psychological and physical' really messes with one's own psyche.

Outside of ME and to quote a recent personal example of 'believability' I think this applies more generally. When I 'won' my Disability Living Allowance Appeal, I was very emotional solely because I felt someone 'believed' me. It was a vindication if you like.

And this applied very clearly, previously when meeting a consultant who had experience with ME who similarly 'believed'. How sad is that?

 

[Don Quichotte]

When I 'won' my Disability Living Allowance Appeal, I was very emotional solely because I felt someone 'believed' me. It was a vindication if you like.

And this applied very clearly, previously when meeting a consultant who had experience with ME who similarly 'believed'. How sad is that?

I can understand (and relate to) that.
This is the kind of perspective I have gained (and try to disseminate to my colleagues, with a variable amount of success), not from being ill in general, but from having an "unexplained illness" and "hard to believe illness" for a significant amount of time.

Today I sat with a group of colleagues, when one of them talked about the usual "40% of patients are abusing the system when they are not truly ill" and I asked her "where is your proof for that?" she replied "it is well known and supported by medical research".
I said "well, you have to understand that there are some diseases and disabilities which are stable and therefore very clear and others, like mine, in which you can see me looking completely normal in your office, but a few hours later you may find me unable to move in bed and connected to a respirator".
I am not sure how much I effected what she thought, but other people told me later that I have given them a new perspective.

I think physicians don't understand how hard it is to deal with a "crazy" illness in which you yourself sometimes find it hard to comprehend what is happening and on top of that deal with the disbelief of those who should be helping you make some sense of it all.

 

[Firestormm]

I came across this earlier this morning: http://www.kcl.ac.uk/innovation/groups/projects/cfs/health/index.aspx I'm actually only half-way through it.

CFS and the facts of life - an article for clinicians​

This is the author: http://www.northumbria.ac.uk/sd/academic/lifesciences/ad/psych/psychstaff/vincentdeary/ It is not clear when it was published although it refers to several reports which I suppose I could trace, anyway, he does speak about 'disbelief' and the differences between research and frontline interventions. It's about CBT, but it might be of interest in regard to what we were considering.

I did wonder if it was something to post on it's own thread, let me know any thoughts please as I wouldn't want to keep hogging Ocean's thread!

And please, I am not endorsing what this chap is saying. Not completely anyway, I haven't gotten through it all yet as I said, but it seems that certain parts are being/have been criticised elsewhere. I'd be interested in some opinions here though.

Like I said I can always ask a moderator to separate the thread if necessary. It's a bit of a read as you'll see.

 

[Esther12]

The Dreary thing is pretty old.

Love the anecdotes... I'm sure that they'll have a great impact on the psychosocial setting faced by patients.

eg:

By locating the problem in the individual and their interpretations, we also easily forget the network of relationships in which they live their lives and how this can effect their wellbeing. This was dramatically illustrated by one client.

For twelve sessions, she had come along with her partner, who was apparently very supportive, an together they had done everything right. Pacing, consistency, sleep management, graded increases in activity were all done by the book. But she wasn't any better. She then missed the next session, and I didn't hear from her for a month. I then got a phonecall: "I've left my partner. I don't have a clue what I'm doing or what I'm going to do, I'm scared as hell, but I'm not fatigued anymore." This change persisted, and what emerged in subsequent sessions was that for years she had felt stuck in a relationship that was emotionally and physically draining, but that she felt too ill to leave.

 

[Firestormm]

I've popped that thing from Dreary here: http://forums.phoenixrising.me/inde...r-chronic-diseases-is-like.18694/#post-284326 Esther. I figured it was perhaps better suited. Thanks for the insight into how old it might be. I'm going to continue reading it through and try to finish it tonight.

From what you have extracted, it kind of reinforces the need to ensure a correct diagnosis in the first place if you ask me. And from what we have heard from the two research papers last year, if specialists are finding alternative diagnoses at the rate of 40-49% of referrals to them, then this anecdotal example above exemplifies the situation.

Who is to spot alternate diagnoses though? It can't always be the initial GP/Physican. Without a specialist or a referral to a psychologist, someone could in theory continue believing they are ill with ME when a lifestyle change could prove this wrong.

Of course some would say that this might play into the hands of the 'Wessely-school' but somebody somewhere somehow has to pick up on these kind of things, and perhaps only by talking to someone are things revealed. Though lol this wasn't the case in the above example! Some people will find perhaps that something happens to make them feel they no longer have 'CFS/ME'.

Until I suppose we discover more about what 'it' is and get some better understanding, it's very hard to know. That lady above could 'feel' her symptoms are reduced or have disappeared simply because some arse is no longer in her life, and then reality hits later.

I wouldn't put much faith in such an anecdote beyond acknowledging perhaps the possibility that this might occur unless/until things change.

 

[Esther12]

Most of the UK CFS 'experts' seem to do more harm than good though. If we're going to keep a system which relies upon them, then it's particularly important that those who make misleading claims face disciplinary action. We can't go on having to trust people like Chalder, White and Crawley in these sorts of positions of power and authority imo.

I think that the main value of anecdotes is in indicating what sort of narrative the teller wishes to construct for their audience.

Deary is one of the stars of Chalder's training videos for GPs:

http://forums.phoenixrising.me/inde...sh-gps-on-how-to-deal-with-cfs-patients.3079/