What might be missing - Treatment:
The orthodox view is that there are no treatments available for primary or secondary progressive MS. There are certainly no disease modifying drugs that are approved for these conditions yet.
One drug that has been proposed to help with progressive MS (off-label) is low dose Naltrexone (LDN). It appears that there have been no definitive studies, but enthusiasts for LDN imply that this is because the drug is off-patent and so there is no financial incentive for anyone to do the necessary trials to prove its efficacy. However, many people make favourable claims about LDN, and it seems that it is tolerable to take, with a reasonable side effect profile. Many people faced with a seriously disabling illness like progressive MS might feel it is worth trying in any case.
The drug can be made up in the small doses used in MS, at a compounding chemist, and although it is not an approved therapy for MS, some neurologists may prescribe it. More information can be found here http://www.lowdosenaltrexone.org/ldn_and_ms.htm
The National Multiple Sclerosis website page on LDN can be found here http://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Low-Dose-Naltrexone
Other alternative and complementary therapies abound, and perhaps what matters more than randomised controlled trials is how these therapies make people feel in individual circumstances.
However, surely a mainstream medical response to treating progressive MS is preferred, because successful protocols can be shared and standardised so that good models of care can reach people at the point of need, wherever they may be. As improvements are made, the model can be upgraded and shared between participating practitioners.
Part of the problem is that patients are most often seen by neurologists in consulting rooms for maybe thirty minutes at a time, at visits that are perhaps three to six months apart, and with neurologists who may not be sharing their methods and successes with other neurologists. Because of this there is little opportunity for the neurologist to observe their patients on a daily basis as they go about the activities of daily living, or to draw real life conclusions from such observations either for individual patients or from groups of patients with similar levels of disability.
Research is also most often separated from real life circumstances, and does not seem to be informed by patients. Research may not involve real people with MS at all, but more likely a mouse or a petri dish instead. Where research does involve real people, it seems unlikely that it will involve an intensive investigation of what is going on inside the bodies of MS patients, but more likely will involve an assessment of yet another drug therapy, that probably evolved from tests on mice, or on whatever it was that was in the petri dishes.
People with progressive MS are essentially left to their own devices. In Australia at least, the author’s experience is that the news that one has a progressive form of MS is not met with a referral to a network of allied health professionals who work together to maximise health outcomes for the patient, but rather a statement from a neurologist that nothing further can be done, and then a treatment vacuum. It is left to the patient to either wait for the predicted decline, or try and cobble together different fragmented medical services, and given the official pessimism about MS, the interest from medical professionals seems to be more about accommodating disability than promoting wellness.
From a patient’s point of view, this is a thoroughly uncomfortable position to be in, and instead of a dreary, disjointed accommodation of disability, people with progressive MS need the medical profession to step up and really shine. Every patient with MS who suffers progression may need considerable financial input from the state (perhaps over decades), and their disability will also result in considerable lost productivity. From a financial point of view alone, it makes sense to prevent or delay the cascade of dependency that follows progression for as long as possible.
Finding out what causes progression:
After around 150 years of study, the mechanism of progression still remains a mystery. It doesn’t seem to be caused entirely by lesions in the CNS, since in the progressive phase, MS is a less inflammatory illness, and in any case, lesion load does not seem to correspond to disability.
People on MS forums sometimes report having many, many lesions visible on MRI but little or nothing in the way of disability. Yet others with very few lesions may complain of severely disabling symptoms. Some people have rapidly advancing disability with no changes visible on MRI at all, and no new active lesions. Some authorities talk about an ‘underlying disease process’ to explain this phenomenon, but insofar as it exists, there doesn’t seem to be an accepted explanation for what it is.
Until we know what causes progression, it will be difficult to treat, and until medical professionals start talking to people with progressive MS and looking at what is going on in their bodies as the ‘progression’ unfolds, the nature of that progression seems unlikely to be found.
Finding out what causes fatigue:
MS is a neuromuscular disease, but all the emphasis seems to be on the ‘neuro’ side of the equation. The experts and the literature talk about impaired nerve conduction and the like, but generally, people with MS don’t complain about paralysis. The symptom most commonly noted by people with MS, and the one which they complain about most often and describe as being the most disabling, is fatigue.
Yet after around 150 years of research, the literature that even discusses this feature often notes that fatigue in MS is ‘poorly understood’. We don’t even seem to have a standard scale for MS fatigue. Words like malaise and lassitude are used somewhat vaguely, so when a person with MS states they are fatigued, we don’t know if they are merely tired, or whether they have a crushing fatigue that makes it difficult for them to move, speak, or even think. We don’t know if they are talking about cognitive fatigue, motor fatigue, fatigability, focal fatigue in a particular joint or limb, or a general, all over, whole-of-body fatigue.
Some people with advancing MS can still move an affected limb. But they complain that there is ‘nothing in the tank’. From being able to move a limb as normal, it starts to fatigue. This may begin as foot drop which only shows up after much exertion. Then they begin to limp after a lot of exertion. They may start off being able to run for long periods, and at the end of the run they limp. Then the distance they can run before limping is reduced, then a bit more. Eventually they can only walk briskly, but after a certain amount of walking, they again begin to limp. Over time, the distance they can walk before limping gets less and less. Now they walk slowly and with difficulty. Perhaps after only a little bit of walking, their muscles no longer respond at all, and they have to sit down to rest.
The picture is not necessarily of a straightforward paralysis though; to the person living through it, it feels like it is a problem with the muscles themselves. They can move the limb, but there is less and less in the tank as time goes by, and it takes longer for the tank to refill. But where is the ‘tank’ and what is the mysterious substance that fills that tank, fuels the muscles, and is somehow less available as time goes by in progressive MS?
Turning to the literature for an explanation, apart from a declaration that the process is poorly understood, there may be some discussion about slowed nerve transmission, which somehow creates fatigue, but this is not necessarily presented as fact, but theory. How is it that fatigued legs from walking create all over body fatigue and mental fatigue?
There is generally no explanation as to why the supposedly causative lesion may not have changed, yet a nerve bundle that allowed you to walk two kilometres without stopping you in your tracks, will now only let you go a few metres before the same thing happens. There is no explanation for why the crushing fatigue in MS can be a disabling symptom before lesions even appear on MRI.
It may well be very helpful to people with MS if there was as much concentration on the muscular side of MS as there is on the ‘neuro’ side.
If the view is taken that MS fatigue is caused by nerve damage and nothing can be done about it, nothing will be done. If the view is taken that there is more to MS fatigue than nerve damage, something inside or outside the CNS, something biochemical perhaps, or some unknown deficiency in the muscles, this can be investigated, and support for the muscles can be offered. Until we know what causes fatigue, it will be difficult to treat, and until medical professionals start talking to people with progressive MS and looking at what is going on in their bodies as the ‘fatigue’ progressively restricts their capacities, the causes of both fatigue and progression seem unlikely to be found.
Unscrambling deconditioning and progression from the cascade of dependence:
It is clear that it is not necessary to have lesions in the central nervous system to become so deconditioned that it is necessary to use a wheelchair, or to become bedbound. The cascade of dependence can occur in diseases like chronic fatigue syndrome (CFS), or simply from prolonged bedrest or inactivity. In CFS, the main factor in progressive disability seems to be the exercise intolerance that defines the disease.
In CFS, a chronic inability to exercise appears to be sufficient to cause a pattern of advancing disability that is similar to what is seen in MS.
But bedrest or prolonged inactivity appears to also be sufficient to create a spiral of deconditioning and exercise intolerance that can cause the pattern of advancing disability that is similar to what is seen in MS.
How much of what we think of as ‘progression’ in MS is due to exercise intolerance and/or prolonged inactivity followed by deconditioning?
Does exercise intolerance cause increasing inactivity or does increasing inactivity produce exercise intolerance, or do they go hand in hand? Where is the tipping point, when increasing disability becomes inevitable due to inactivity? How much inactivity per day will create a self-perpetuating slide into disability?
People with MS should be given sufficient education and support from the moment of their diagnosis to ensure that deconditioning through inactivity never enters into the progression equation. This is one facet of progression that the medical profession can actually control, but it would take weekly or fortnightly monitoring and fitness measurements to ensure it does not become part of the landscape of progressive MS in individual circumstances.
Treating the untreatable:
The orthodoxy tells us that “there are no treatments for progressive MS”. This seems to be shorthand for “there are no drugs for progressive MS”. Essentially that model of healthcare is based on a diagnostic label, followed by drug dispensing, and where there is no drug dispensing possible, the model simply collapses.
But MS is not caused by a lack of any disease modifying drug. And for those lucky enough to have been dispensed a disease modifying drug, they may have had little or no relief of symptoms, a whole range of debilitating side effects to battle on top of their MS, and ultimately, no protection from progression. For those who received one or more disease modifying drugs and just got worse anyway, it becomes clear to them that the underlying disease process is not being treated. If so, then what is being ‘treated’? If even the treatments are not a treatment, how can we treat the untreatable?
Here are some points for consideration…
Using a chronic disease model:
The current model of health care seems to be based on the 10-minute dispensing model. It’s reactive, not proactive, and the dispensing process almost seems to be based on guesswork or intuition at times. Often a doctor will write a script for a powerful drug with serious side effects after listening to the patient for the briefest of time, asking minimal questions, and without any pathology tests to see what is going on in the patient’s body, or without even coming around the desk and examining them physically. The patient goes away in trepidation, takes the powerful drug, and if they don’t get better, or feel worse, back they go to the doctor, and a different drug may be tried. That may possibly be a suitable model of health care for people with minor ailments, but it is not suitable for chronic conditions.
Time: MS is a lifelong, chronic condition with no known cause or cure. People with MS need long consultations with their health care practitioners so they can build a relationship with them, long enough so the practitioner can ask the right questions, and the patient can ask the right questions. Long enough to get the whole picture, to devise a coherent strategy, and properly monitor outcomes. The physician needs to understand globally what is happening in the person’s body and in their life. They have to be able to treat the whole person in every dimension, and where they can’t they need to refer the patient to someone who can, and to get feedback from those other physicians, and then integrate their advice and treatments back into the primary care of the patient.
Giving patients more time with the people who are supposed to be helping them may seem expensive, but not when the stupendous cost of accommodating disability is considered.
Team: The MS patient needs a multidisciplinary team. Medical care is currently fragmented into specialities, and just because a person with MS may see different specialists, does not mean they have a medical team. A team works TOGETHER to achieve a particular goal. They COMMUNICATE with each other, and most importantly they have a COACH, who talks to the team individually and collectively about strategy and their contribution to that strategy, so that they are focussed on achieving the same goal, and all pull together.
The coach acts as a coordinator, the patient is at the centre, and the medical specialists revolve around the patient. In the industrial model of medicine, the reverse is true. The patient attends at the convenience of the medical industry and has little to no input into the process. In the industrial model of medicine, the coach or overall coordinator is missing. The coach/coordinator needs to be an expert on MS from diagnosis to the grave, and needs to spend a lot of time with the patient so that the patient understands what they have to do to participate in their healthcare, but also so that the coach understands and accommodates what the patient is experiencing, and what they are trying to achieve. Listening to the symptoms that the patient complains of, and really trying to address them in non-harmful ways is key.
Until the medical position of coach/coordinator is created and genuine team based medicine is adopted, people with chronic health conditions like MS will struggle.
Turning points: In MS, there are critical turning points that must be recognised so that everything can be done to either prevent them happening in the first place, or prevent the cascade of negative consequences that follow on from each turning point. These turning points are often essentially ‘points of no return’. Too often physicians seem too comfortable with a patient reaching a point of no return.
Turning points are horrifying to the patient. Just as horrifying is what can seem to be a carelessly cheerful or indifferent medical response to increasing disability. If there is a response, it is often to simply accommodate the disability, but this can be done so poorly that the lack of care following an initial point of no return, creates a succession of points of no return that could have been avoided. At the point of no return, the patient may leave one physician’s care and transition to another, with a different medical emphasis. This means the original physician does not have to see the consequences of the failure of the medical model that they practice. The patient may then be passed to someone whose goal is not necessarily wellness, but accommodation of disability, which leads to more accommodation of disability, and onwards in an ever declining spiral.
In MS, some key turning points are the loss of a driver’s licence, the loss of a job, the loss of social support, but most importantly the loss of the capacity to walk unaided, and the transition to a wheelchair with the additional personal and medical problems that inevitably brings.
Recognising avoidable turning points in MS, and working strategically to prevent them or reduce their impact, is one of the keys to managing this chronic disease.
Treatment: From a patient perspective, the lack of a drug therapy for progressive MS can be liberating, because the focus can switch from swallowing a pill, to optimising health. The body contains many systems. Optimising those systems provides the best possible health in the circumstances.
If MS is caused (for example) by the action of an infection, then diet, exercise and meditation will not address that. Only eradicating the infection will ultimately resolve the problem. However, in the absence of a coherent attempt to search the bodies of people with MS for chronic infections that are debilitating the patient, attacking the nervous system, or negatively modulating their immune system, then improving diet, exercise and stress management cannot hurt.
Optimising diet, exercise and stress management is recommended for healthy people. How much more important must these strategies be for the chronically ill?
In the absence of any pills to swallow, something a person can do with the support of their physicians is to try and make sure that each body system is working at optimum performance. In investigating each body system, co-morbidities may be found that may never have been discovered otherwise. If the respiratory system is checked, and sleep apnoea is found, that can be optimised. If the gastrointestinal system is checked, and some form of malabsorption is found that is causing a functional malnutrition, that can be optimised, and so on.
If every body system is checked, if problems identified are overcome and each system is optimised, if the quality of air inputs, drink inputs, nutrition and activity levels are all optimised, and if stress levels are minimised and chronic infections kept under control, and if people with MS were provided with timely, coherent, and coordinated whole of life healthcare with a focus on outcomes, this would provide a chronic healthcare model that would genuinely treat progressive MS.
Treatments unthought of yet: This proposed model of investigative, observational medicine allows for treatments for progressive MS that are as yet undreamed of. Physicians like Roy Swank, who made observations and tested theories like his low fat diet, also kept looking and trying different things. He didn't just put people on the diet and leave them to it. He actively managed their health care. His ongoing laboratory work led to research into abnormalities in the blood of people with MS, and his use of plasma transfusions at key points in the illness, apparently had considerable success. If such investigative, observational, whole of life healthcare was widely practiced for the benefit of people with progressive MS, imagine the innovations which could develop.
Conclusions:
A pill cannot understand or empathise with anything a person is going through. Through side effects, a pill may well create as many (or more) problems than it solves, and insofar as a pill is expected to resolve a healthcare problem in chronic diseases, it can only be the beginning. It can’t do the work necessary to rehabilitate a person whose muscles are deconditioned. It cannot mechanically ventilate an airway that collapses every night, starving a person of oxygen, and preventing them from getting the restoration and rejuvenation of a good night’s sleep. It cannot support, encourage, motivate, inspire, comfort or simply be present for someone who is in great pain or distress.
The crying need in MS care is for an understanding that there is a missing health care professional in the management of chronic diseases. Someone who knows the subject from beginning to end, but is not arrogant or dictatorial about that knowledge. Someone with an open mind, curious, observational, optimistic, and someone who will ask ‘why’? Someone who will realise that certain medical beliefs and attitudes will only result in negative outcomes for patients. Someone who can proactively work with the patient to optimise health, wellness, independence, and quality of life, and draw the fragmented health professionals that must necessarily be involved, into a coordinated team. This position could be filled by an MS chronic disease management coach/coordinator and it could be someone like a specialist nurse, who has weekly or fortnightly contact with the patient, preferably in the home, but by telephone or Skype if need be, and who can coordinate necessary care, and document the outcomes.
Until the ‘magic bullet’ is found that either restores people with MS to perfect health, or at least stops the disease getting any worse, then an integrated, holistic, health optimisation strategy appears to be a new way of thinking about health care that offers the best possibility to maximise health outcomes in progressive MS. If this approach proves successful for progressive MS, it is likely to provide the same or better results for relapsing remitting MS.
The orthodox view is that there are no treatments available for primary or secondary progressive MS. There are certainly no disease modifying drugs that are approved for these conditions yet.
One drug that has been proposed to help with progressive MS (off-label) is low dose Naltrexone (LDN). It appears that there have been no definitive studies, but enthusiasts for LDN imply that this is because the drug is off-patent and so there is no financial incentive for anyone to do the necessary trials to prove its efficacy. However, many people make favourable claims about LDN, and it seems that it is tolerable to take, with a reasonable side effect profile. Many people faced with a seriously disabling illness like progressive MS might feel it is worth trying in any case.
The drug can be made up in the small doses used in MS, at a compounding chemist, and although it is not an approved therapy for MS, some neurologists may prescribe it. More information can be found here http://www.lowdosenaltrexone.org/ldn_and_ms.htm
The National Multiple Sclerosis website page on LDN can be found here http://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Low-Dose-Naltrexone
Other alternative and complementary therapies abound, and perhaps what matters more than randomised controlled trials is how these therapies make people feel in individual circumstances.
However, surely a mainstream medical response to treating progressive MS is preferred, because successful protocols can be shared and standardised so that good models of care can reach people at the point of need, wherever they may be. As improvements are made, the model can be upgraded and shared between participating practitioners.
Part of the problem is that patients are most often seen by neurologists in consulting rooms for maybe thirty minutes at a time, at visits that are perhaps three to six months apart, and with neurologists who may not be sharing their methods and successes with other neurologists. Because of this there is little opportunity for the neurologist to observe their patients on a daily basis as they go about the activities of daily living, or to draw real life conclusions from such observations either for individual patients or from groups of patients with similar levels of disability.
Research is also most often separated from real life circumstances, and does not seem to be informed by patients. Research may not involve real people with MS at all, but more likely a mouse or a petri dish instead. Where research does involve real people, it seems unlikely that it will involve an intensive investigation of what is going on inside the bodies of MS patients, but more likely will involve an assessment of yet another drug therapy, that probably evolved from tests on mice, or on whatever it was that was in the petri dishes.
People with progressive MS are essentially left to their own devices. In Australia at least, the author’s experience is that the news that one has a progressive form of MS is not met with a referral to a network of allied health professionals who work together to maximise health outcomes for the patient, but rather a statement from a neurologist that nothing further can be done, and then a treatment vacuum. It is left to the patient to either wait for the predicted decline, or try and cobble together different fragmented medical services, and given the official pessimism about MS, the interest from medical professionals seems to be more about accommodating disability than promoting wellness.
From a patient’s point of view, this is a thoroughly uncomfortable position to be in, and instead of a dreary, disjointed accommodation of disability, people with progressive MS need the medical profession to step up and really shine. Every patient with MS who suffers progression may need considerable financial input from the state (perhaps over decades), and their disability will also result in considerable lost productivity. From a financial point of view alone, it makes sense to prevent or delay the cascade of dependency that follows progression for as long as possible.
Finding out what causes progression:
After around 150 years of study, the mechanism of progression still remains a mystery. It doesn’t seem to be caused entirely by lesions in the CNS, since in the progressive phase, MS is a less inflammatory illness, and in any case, lesion load does not seem to correspond to disability.
People on MS forums sometimes report having many, many lesions visible on MRI but little or nothing in the way of disability. Yet others with very few lesions may complain of severely disabling symptoms. Some people have rapidly advancing disability with no changes visible on MRI at all, and no new active lesions. Some authorities talk about an ‘underlying disease process’ to explain this phenomenon, but insofar as it exists, there doesn’t seem to be an accepted explanation for what it is.
Until we know what causes progression, it will be difficult to treat, and until medical professionals start talking to people with progressive MS and looking at what is going on in their bodies as the ‘progression’ unfolds, the nature of that progression seems unlikely to be found.
Finding out what causes fatigue:
MS is a neuromuscular disease, but all the emphasis seems to be on the ‘neuro’ side of the equation. The experts and the literature talk about impaired nerve conduction and the like, but generally, people with MS don’t complain about paralysis. The symptom most commonly noted by people with MS, and the one which they complain about most often and describe as being the most disabling, is fatigue.
Yet after around 150 years of research, the literature that even discusses this feature often notes that fatigue in MS is ‘poorly understood’. We don’t even seem to have a standard scale for MS fatigue. Words like malaise and lassitude are used somewhat vaguely, so when a person with MS states they are fatigued, we don’t know if they are merely tired, or whether they have a crushing fatigue that makes it difficult for them to move, speak, or even think. We don’t know if they are talking about cognitive fatigue, motor fatigue, fatigability, focal fatigue in a particular joint or limb, or a general, all over, whole-of-body fatigue.
Some people with advancing MS can still move an affected limb. But they complain that there is ‘nothing in the tank’. From being able to move a limb as normal, it starts to fatigue. This may begin as foot drop which only shows up after much exertion. Then they begin to limp after a lot of exertion. They may start off being able to run for long periods, and at the end of the run they limp. Then the distance they can run before limping is reduced, then a bit more. Eventually they can only walk briskly, but after a certain amount of walking, they again begin to limp. Over time, the distance they can walk before limping gets less and less. Now they walk slowly and with difficulty. Perhaps after only a little bit of walking, their muscles no longer respond at all, and they have to sit down to rest.
The picture is not necessarily of a straightforward paralysis though; to the person living through it, it feels like it is a problem with the muscles themselves. They can move the limb, but there is less and less in the tank as time goes by, and it takes longer for the tank to refill. But where is the ‘tank’ and what is the mysterious substance that fills that tank, fuels the muscles, and is somehow less available as time goes by in progressive MS?
Turning to the literature for an explanation, apart from a declaration that the process is poorly understood, there may be some discussion about slowed nerve transmission, which somehow creates fatigue, but this is not necessarily presented as fact, but theory. How is it that fatigued legs from walking create all over body fatigue and mental fatigue?
There is generally no explanation as to why the supposedly causative lesion may not have changed, yet a nerve bundle that allowed you to walk two kilometres without stopping you in your tracks, will now only let you go a few metres before the same thing happens. There is no explanation for why the crushing fatigue in MS can be a disabling symptom before lesions even appear on MRI.
It may well be very helpful to people with MS if there was as much concentration on the muscular side of MS as there is on the ‘neuro’ side.
If the view is taken that MS fatigue is caused by nerve damage and nothing can be done about it, nothing will be done. If the view is taken that there is more to MS fatigue than nerve damage, something inside or outside the CNS, something biochemical perhaps, or some unknown deficiency in the muscles, this can be investigated, and support for the muscles can be offered. Until we know what causes fatigue, it will be difficult to treat, and until medical professionals start talking to people with progressive MS and looking at what is going on in their bodies as the ‘fatigue’ progressively restricts their capacities, the causes of both fatigue and progression seem unlikely to be found.
Unscrambling deconditioning and progression from the cascade of dependence:
It is clear that it is not necessary to have lesions in the central nervous system to become so deconditioned that it is necessary to use a wheelchair, or to become bedbound. The cascade of dependence can occur in diseases like chronic fatigue syndrome (CFS), or simply from prolonged bedrest or inactivity. In CFS, the main factor in progressive disability seems to be the exercise intolerance that defines the disease.
In CFS, a chronic inability to exercise appears to be sufficient to cause a pattern of advancing disability that is similar to what is seen in MS.
But bedrest or prolonged inactivity appears to also be sufficient to create a spiral of deconditioning and exercise intolerance that can cause the pattern of advancing disability that is similar to what is seen in MS.
How much of what we think of as ‘progression’ in MS is due to exercise intolerance and/or prolonged inactivity followed by deconditioning?
Does exercise intolerance cause increasing inactivity or does increasing inactivity produce exercise intolerance, or do they go hand in hand? Where is the tipping point, when increasing disability becomes inevitable due to inactivity? How much inactivity per day will create a self-perpetuating slide into disability?
People with MS should be given sufficient education and support from the moment of their diagnosis to ensure that deconditioning through inactivity never enters into the progression equation. This is one facet of progression that the medical profession can actually control, but it would take weekly or fortnightly monitoring and fitness measurements to ensure it does not become part of the landscape of progressive MS in individual circumstances.
Treating the untreatable:
The orthodoxy tells us that “there are no treatments for progressive MS”. This seems to be shorthand for “there are no drugs for progressive MS”. Essentially that model of healthcare is based on a diagnostic label, followed by drug dispensing, and where there is no drug dispensing possible, the model simply collapses.
But MS is not caused by a lack of any disease modifying drug. And for those lucky enough to have been dispensed a disease modifying drug, they may have had little or no relief of symptoms, a whole range of debilitating side effects to battle on top of their MS, and ultimately, no protection from progression. For those who received one or more disease modifying drugs and just got worse anyway, it becomes clear to them that the underlying disease process is not being treated. If so, then what is being ‘treated’? If even the treatments are not a treatment, how can we treat the untreatable?
Here are some points for consideration…
Using a chronic disease model:
The current model of health care seems to be based on the 10-minute dispensing model. It’s reactive, not proactive, and the dispensing process almost seems to be based on guesswork or intuition at times. Often a doctor will write a script for a powerful drug with serious side effects after listening to the patient for the briefest of time, asking minimal questions, and without any pathology tests to see what is going on in the patient’s body, or without even coming around the desk and examining them physically. The patient goes away in trepidation, takes the powerful drug, and if they don’t get better, or feel worse, back they go to the doctor, and a different drug may be tried. That may possibly be a suitable model of health care for people with minor ailments, but it is not suitable for chronic conditions.
Time: MS is a lifelong, chronic condition with no known cause or cure. People with MS need long consultations with their health care practitioners so they can build a relationship with them, long enough so the practitioner can ask the right questions, and the patient can ask the right questions. Long enough to get the whole picture, to devise a coherent strategy, and properly monitor outcomes. The physician needs to understand globally what is happening in the person’s body and in their life. They have to be able to treat the whole person in every dimension, and where they can’t they need to refer the patient to someone who can, and to get feedback from those other physicians, and then integrate their advice and treatments back into the primary care of the patient.
Giving patients more time with the people who are supposed to be helping them may seem expensive, but not when the stupendous cost of accommodating disability is considered.
Team: The MS patient needs a multidisciplinary team. Medical care is currently fragmented into specialities, and just because a person with MS may see different specialists, does not mean they have a medical team. A team works TOGETHER to achieve a particular goal. They COMMUNICATE with each other, and most importantly they have a COACH, who talks to the team individually and collectively about strategy and their contribution to that strategy, so that they are focussed on achieving the same goal, and all pull together.
The coach acts as a coordinator, the patient is at the centre, and the medical specialists revolve around the patient. In the industrial model of medicine, the reverse is true. The patient attends at the convenience of the medical industry and has little to no input into the process. In the industrial model of medicine, the coach or overall coordinator is missing. The coach/coordinator needs to be an expert on MS from diagnosis to the grave, and needs to spend a lot of time with the patient so that the patient understands what they have to do to participate in their healthcare, but also so that the coach understands and accommodates what the patient is experiencing, and what they are trying to achieve. Listening to the symptoms that the patient complains of, and really trying to address them in non-harmful ways is key.
Until the medical position of coach/coordinator is created and genuine team based medicine is adopted, people with chronic health conditions like MS will struggle.
Turning points: In MS, there are critical turning points that must be recognised so that everything can be done to either prevent them happening in the first place, or prevent the cascade of negative consequences that follow on from each turning point. These turning points are often essentially ‘points of no return’. Too often physicians seem too comfortable with a patient reaching a point of no return.
Turning points are horrifying to the patient. Just as horrifying is what can seem to be a carelessly cheerful or indifferent medical response to increasing disability. If there is a response, it is often to simply accommodate the disability, but this can be done so poorly that the lack of care following an initial point of no return, creates a succession of points of no return that could have been avoided. At the point of no return, the patient may leave one physician’s care and transition to another, with a different medical emphasis. This means the original physician does not have to see the consequences of the failure of the medical model that they practice. The patient may then be passed to someone whose goal is not necessarily wellness, but accommodation of disability, which leads to more accommodation of disability, and onwards in an ever declining spiral.
In MS, some key turning points are the loss of a driver’s licence, the loss of a job, the loss of social support, but most importantly the loss of the capacity to walk unaided, and the transition to a wheelchair with the additional personal and medical problems that inevitably brings.
Recognising avoidable turning points in MS, and working strategically to prevent them or reduce their impact, is one of the keys to managing this chronic disease.
Treatment: From a patient perspective, the lack of a drug therapy for progressive MS can be liberating, because the focus can switch from swallowing a pill, to optimising health. The body contains many systems. Optimising those systems provides the best possible health in the circumstances.
If MS is caused (for example) by the action of an infection, then diet, exercise and meditation will not address that. Only eradicating the infection will ultimately resolve the problem. However, in the absence of a coherent attempt to search the bodies of people with MS for chronic infections that are debilitating the patient, attacking the nervous system, or negatively modulating their immune system, then improving diet, exercise and stress management cannot hurt.
Optimising diet, exercise and stress management is recommended for healthy people. How much more important must these strategies be for the chronically ill?
In the absence of any pills to swallow, something a person can do with the support of their physicians is to try and make sure that each body system is working at optimum performance. In investigating each body system, co-morbidities may be found that may never have been discovered otherwise. If the respiratory system is checked, and sleep apnoea is found, that can be optimised. If the gastrointestinal system is checked, and some form of malabsorption is found that is causing a functional malnutrition, that can be optimised, and so on.
If every body system is checked, if problems identified are overcome and each system is optimised, if the quality of air inputs, drink inputs, nutrition and activity levels are all optimised, and if stress levels are minimised and chronic infections kept under control, and if people with MS were provided with timely, coherent, and coordinated whole of life healthcare with a focus on outcomes, this would provide a chronic healthcare model that would genuinely treat progressive MS.
Treatments unthought of yet: This proposed model of investigative, observational medicine allows for treatments for progressive MS that are as yet undreamed of. Physicians like Roy Swank, who made observations and tested theories like his low fat diet, also kept looking and trying different things. He didn't just put people on the diet and leave them to it. He actively managed their health care. His ongoing laboratory work led to research into abnormalities in the blood of people with MS, and his use of plasma transfusions at key points in the illness, apparently had considerable success. If such investigative, observational, whole of life healthcare was widely practiced for the benefit of people with progressive MS, imagine the innovations which could develop.
Conclusions:
A pill cannot understand or empathise with anything a person is going through. Through side effects, a pill may well create as many (or more) problems than it solves, and insofar as a pill is expected to resolve a healthcare problem in chronic diseases, it can only be the beginning. It can’t do the work necessary to rehabilitate a person whose muscles are deconditioned. It cannot mechanically ventilate an airway that collapses every night, starving a person of oxygen, and preventing them from getting the restoration and rejuvenation of a good night’s sleep. It cannot support, encourage, motivate, inspire, comfort or simply be present for someone who is in great pain or distress.
The crying need in MS care is for an understanding that there is a missing health care professional in the management of chronic diseases. Someone who knows the subject from beginning to end, but is not arrogant or dictatorial about that knowledge. Someone with an open mind, curious, observational, optimistic, and someone who will ask ‘why’? Someone who will realise that certain medical beliefs and attitudes will only result in negative outcomes for patients. Someone who can proactively work with the patient to optimise health, wellness, independence, and quality of life, and draw the fragmented health professionals that must necessarily be involved, into a coordinated team. This position could be filled by an MS chronic disease management coach/coordinator and it could be someone like a specialist nurse, who has weekly or fortnightly contact with the patient, preferably in the home, but by telephone or Skype if need be, and who can coordinate necessary care, and document the outcomes.
Until the ‘magic bullet’ is found that either restores people with MS to perfect health, or at least stops the disease getting any worse, then an integrated, holistic, health optimisation strategy appears to be a new way of thinking about health care that offers the best possibility to maximise health outcomes in progressive MS. If this approach proves successful for progressive MS, it is likely to provide the same or better results for relapsing remitting MS.