Can ME/CFS patients in the UK choose who they go to see on the NHS?

[Valentijn]

I absolutely agree that PWME who also have anaemia or Addison's disease causing OI should have the necessary tests for ANOTHER cause for OI on top of ME. But we are working from the starting point that it seems that 95% of PWME have OI, which presumably means that MEs cause OI as well and that sort of OI we have no clue what to do about as far as I can see.

Why should we start from the default position of assuming that ME-related OI is inherently different regarding appropriate treatments compared to OI without an ultimate known cause? Why cannot a symptom simply be treated as a symptom unto itself - "permissible" symptoms such as depression in ME certainly are, and pain in ME sometimes is as well. Why is there this huge exception for biological and objective symptoms caused by this one disease, which doesn't apply to psychiatric symptoms caused by the same disease, or biological symptoms caused by any other disease?

It's illogical, irrational, inconsistent, and inhumane.

 

[Marco]

OK, I think I saw the paper Marco cited on a previous occasion. The authors recommend treatment on the basis of what seems logical to them - if A is up bring A down, if B is down bring B up. But they do not cite any formal evidence for this having been shown to be the right thing to do. This sort of 'flying by the seat of the pants' medicine is to my mind obsolete..

You may be right. I have to admit that I was somewhat surprised that they cited some proprietry technology but with no declaration of (dis)interest. Yet I got the impression, and could be wrong; that this was a 'light treatment' primer rather than an academic paper which might excuse the lack of references. Maybe not.

Otherwise I find it a little surprising and disconcerting that mainstream medicine isn't able to categorise and treat such a widespread problem such as autonomic dysfunction.

 

[Jonathan Edwards]

Why should we start from the default position of assuming that ME-related OI is inherently different regarding appropriate treatments compared to OI without an ultimate known cause? Why cannot a symptom simply be treated as a symptom unto itself - "permissible" symptoms such as depression in ME certainly are, and pain in ME sometimes is as well. Why is there this huge exception for biological and objective symptoms caused by this one disease, which doesn't apply to psychiatric symptoms caused by the same disease, or biological symptoms caused by any other disease?

It's illogical, irrational, inconsistent, and inhumane.

Because there are major lessons to be learnt in the history of medicine about not treating symptoms without understanding how they arise. After decades of giving people on intensive care albumin to 'correct' a low albumin level it was discovered that this produces a worse outcome - and worse outcome on ITU tends to mean not surviving. Low albumin from starvation responds well to protein. Treating low albumin in nephrotic syndrome is more likely to put the patient into uraemic coma than anything useful. Osteoporosis due to inactivity benefits from calcium. Giving calcium to a person whose osteoporosis is due to myeloma can similarly put them into renal crisis from hypercalcaemia. 'What ought to work', based on 'if A is up bring it down' was OK in the 1970s but we have learnt to be more careful. As I think Alex and someone else I forget both said, we are dealing with complex systems dynamics here. If you have ever tuned a model aero engine you will know that sometimes a bit more helps and sometimes a bit less helps and it isn't at all obvious which until you really understand engines.

I fully admit that I may be missing something really important here from Julia Newton or whoever. I am quite expecting to be shown to be wrong in the end. That's the point of the debate. But not so far!

 

[Marco]

I must admit I have the same misgivings about the recent and yet to be replicated findings of microglial activation in ME/CFS. The knee jerk reaction might be how to bring it down. But it may be a neuroprotective response.

 

[Leopardtail]

Because there are major lessons to be learnt in the history of medicine about not treating symptoms without understanding how they arise. After decades of giving people on intensive care albumin to 'correct' a low albumin level it was discovered that this produces a worse outcome - and worse outcome on ITU tends to mean not surviving. Low albumin from starvation responds well to protein. Treating low albumin in nephrotic syndrome is more likely to put the patient into uraemic coma than anything useful. Osteoporosis due to inactivity benefits from calcium. Giving calcium to a person whose osteoporosis is due to myeloma can similarly put them into renal crisis from hypercalcaemia. 'What ought to work', based on 'if A is up bring it down' was OK in the 1970s but we have learnt to be more careful. As I think Alex and someone else I forget both said, we are dealing with complex systems dynamics here. If you have ever tuned a model aero engine you will know that sometimes a bit more helps and sometimes a bit less helps and it isn't at all obvious which until you really understand engines.

I fully admit that I may be missing something really important here from Julia Newton or whoever. I am quite expecting to be shown to be wrong in the end. That's the point of the debate. But not so far!

Julia Newton investigate all the common causes of OI in ME patients. In the process discovered a portion ONLY had OI and that the conventional treatments work well. She is a Newcastle University and has covered ME from multiple angles. There is probably no better place to start if you want solid science on ME with no causal presumtion.

Papers here

 

[Sushi]

@Jonathan Edwards
I haven't had much time to research this since seeing this topic come up but will stick my toe in here as I was successfully treated by an autonomic specialist in the States who kept up with the research (he himself has POTS). I know that there is an group called Dysautonomia International comprised of physicians, researchers, patients etc. They have annual conferences and list a research section.

Also, Vanderbilt University has an Autonomic Dysfunction Center. They do a fair amount of research and list a research section on their website. There might be some respectable studies listed on these two sites.

I was treated very successful with a combo of medications taken at low dose. All my OI symptoms resolved but later I wanted to delve more into causal factors rather than just take treatments whose benefits would dissolve as soon as I stopped the meds.

Sushi

 

[Valentijn]

Because there are major lessons to be learnt in the history of medicine about not treating symptoms without understanding how they arise.

That is not a satisfactory explanation. To start with, that level of understanding is often not required for symptoms occurring by themselves or in other disease, especially so for extremely disabling symptoms.

Additionally, testing itself is what is going to provide the additional understanding needed to choose a safe and effective treatment. If the testing is not done at all (because "hey, it's ME and we don't understand 100% of the disease") then there will never be sufficient understanding of what is causing the OI in general or in any particular patient.

And finally, if patients are extremely disabled by a symptom, they will find a way to get treatment. Does the NHS really expect patients to lay in bed for months, years, or decades without trying to solve such a serious problem? Certainly it's far safer to have doctors involved, versus trying random stuff we hear about from other patients on the internet.

 

[A.B.]

There have to be at least a few safe treatments that can be offered to ME/CFS patients even if the evidence for their effectiveness is anecdotal.

Something such as B12 injections. The treatment costs almost nothing and is safe as far as I know. And it's probably better than patients deciding they're going to try homeopathy because their doctor is doing nothing. If it makes patients feel a little better that's already something.

I think that this is generally not happening is a symptom of medicine not having a plan on how to deal with patients suffering from illnesses that are poorly understood. Patients either get no to little help, or are sent to the psychiatrist.

 

[Jonathan Edwards]

Julia Newton investigate all the common causes of OI in ME patients. In the process discovered a portion ONLY had OI and that the conventional treatments work well. She is a Newcastle University and has covered ME from multiple angles. There is probably no better place to start if you want solid science on ME with no causal presumtion.

Papers here

Yes, I have met her and am aware of her interests and work. I cannot pin down a formal treatment study for OI in ME yet. There is a mention on an MEA site of her talking about the 'possibility' of using fludrocortisone and midrodine but I am unclear as to whether she would use these herself much.

 

[justy]

still following the very lively debate with interest - thanks to everyone taking part.

I have to agree that some of the arguments here are very persuasive and making me stop and think. I agree that we can't know if a particular symptom or dysfunction is protective or not until we know more.

For example I have very low ferritin and dip in and out of iron deficiency anaemia, despite supplementing with iron. This has never been properly investigated and my GP just keeps giving me more iron pills and then muttering something about me being a pre menopausal woman and blood loss etc.

I vacillate between wanting to take the iron and taking it for months, to then wondering if I perhaps had anaemia of chronic disease would taking iron be the right thing to do. What if I have a bacterial infection (in fact I now know I have at least two chronic bacterial infections and perhaps three) that is feeding off the iron?

A few years ago I was tested by a private doctor who said my manganese levels were very low. I was given manganese as a supplement. Now I am seeing another doctor, who is also a researcher in M.E who says I must not take manganese as I most likely have Lyme disease and Lyme and Bartonella (which I do have) feed off of the hosts manganese - all the manganese supplementing I did before was most likely helping the bacteria to grow.

 

[Jonathan Edwards]

That is not a satisfactory explanation. To start with, that level of understanding is often not required for symptoms occurring by themselves or in other disease, especially so for extremely disabling symptoms.

You are right, that was the wrong argument. What I should have said is that we should not treat symptoms or physiological ups or downs a particular way unless we are reasonably sure that the cause can be allocated to some reasonably homogeneous diagnostic group in which we have evidence for efficacy and safety. Or something complicated like that. I think my examples indicate what I meant. We may not understand 100% the reasons why albumin goes down in acute illness or why myeloma raises calcium but at least we understand that these are different clinical groups from nephrotic syndrome and inactivity osteoporosis. The problem I see with ME is that we don't even have confidence that is a homogeneous clinical group.

And finally, if patients are extremely disabled by a symptom, they will find a way to get treatment. Does the NHS really expect patients to lay in bed for months, years, or decades without trying to solve such a serious problem? Certainly it's far safer to have doctors involved, versus trying random stuff we hear about from other patients on the internet.

Yes, of course its safer to have doctors involved who have no financial interest in pushing a particular treatment. I totally agree that PWME should get more attention in NHS care. But I do not buy the argument that it is better to give a placebo that is probably (maybe) safe than leave well alone. I have spent many years looking after people for whom I had no useful pharmacological therapy. My solution was to be honest about it and to spend as much time as it needed with the person to gain their trust and confidence in the belief that we were together doing the best we could. Most of them kept on coming. In the meantime many of my colleagues were doling out fancy new drugs like opren, vioxx and osmosin that ended up being withdrawn for causing numerous deaths. There are no on prescription smarties in my view.

 

[Jonathan Edwards]

There have to be at least a few safe treatments that can be offered to ME/CFS patients even if the evidence for their effectiveness is anecdotal.

Something such as B12 injections. The treatment costs almost nothing and is safe as far as I know. And it's probably better than patients deciding they're going to try homeopathy because their doctor is doing nothing. If it makes patients feel a little better that's already something.

I think that this is generally not happening is a symptom of medicine not having a plan on how to deal with patients suffering from illnesses that are poorly understood. Patients either get no to little help, or are sent to the psychiatrist.

I agree this is tough. Nobody really knows what the right thing to do is here. I came to the conclusion that it was better to listen and show interest and explain that I thought it was better not to take pills with potentially dangerous effects. There are times when I took a different line and played along with a need to take something but that does not translate into suggesting a new NICE guideline to recommend to all GPs.

I fully appreciate how hard a problem this is and I do not pretend to have kept everybody happy. George Bernard Shaw said the difference between humans and animals is that humans like taking medicines. The problem is that a lot of medicines are subtle or not so subtle poisons. Samuel Hahnemann around 1800 realised that since almost all medicines (like mercury and arsenic) were doing more harm than good he might do better to sell people tablets with nothing in them at all. In order to sell them he invented an idea of how the would work by 'treating like with like' as Jenner had done with vaccination ten years before (although for reasons that had no relevance to almost any other treatment). So homeopathy was a pretty clever idea at the time. And maybe it still is in some situations. At least it is completely safe. If we are going down the placebo route homeopathy has to be the best way in fact. So it isn't easy, to my mind.

I realise that my sticking to logic may seem brutal and if people are doing well on their tablets that is fine. But we are talking about being justified in recommending things for others without being sure that is wise. And I am needling everyone to try to winkle out the truth. Maybe Prof Newton should be given a hefty grant to do a really good trial to confirm her treatment experience - sounds like it to me. Maybe it has been done and we have missed it.

 

[A.B.]

Maybe Prof Newton should be given a hefty grant to do a really good trial to confirm her treatment experience - sounds like it to me. Maybe it has been done and we have missed it.

That already sounds like a plan.

 

[A.B.]

still following the very lively debate with interest - thanks to everyone taking part.

I have to agree that some of the arguments here are very persuasive and making me stop and think. I agree that we can't know if a particular symptom or dysfunction is protective or not until we know more.

There are probably many here who have tried some stimulant and got worse in the long term. The worst crash I've ever had was the result of such an experiment. This could be interpreted as a sign that the fatigue (in my case) is an energy conservation strategy. Indeed, consciously resting often and as soon as fatigue becomes more noticeable has been a good approach. It's just not enough to get well.

 

[NK17]

Basically what we are saying and uncovering here is the following awful truth:

ME is not recognized as a serious chronic handicapping disease by the authorities.

Because it's not recognized by the authorities, they tell us (clinician, researchers and patients) to come up with solid proof and biomarkers of the organic nature of the disease.

To find those evidences costs time and money, money that we certainly don't have. As far as time we got plenty, but the quality of it is very bad.

So the authorities can continue to ignore the reality of ME.

What can we do, that hasn't been done yet?

Things are starting to move, money are being raised, brilliant minds are finally taking notice and start to be engaged.

I see and agree with all the patients here, the ones who call for symptomatic treatments and the ones who wants to have access to the so called "big guns". In most cases PWME are completely lost and abandoned, which from my point of view is a pure case of crime against humanity.

@Jonathan Edwards are we missing something, apart from the solid studies that most of the times don't get the due attention from most GPs and PCP's?

How are we going to change the system? How can we overcome this impasse? We need your experience and your gravitas, like all living creatures need water!

 

[Sidereal]

I was diagnosed with POTS by a neurologist who trained at the autonomic disorders unit at Queen's Square. This person was totally uninterested in doing any kind of investigations despite my severe disability, no official diagnosis at the time, and a very high ANA titre which the GP had shrugged off. I got the impression in my dealings with the medical profession that OI/POTS is only marginally better tolerated than ME/CFS and that there are lingering doubts in their minds as to whether this is a "real" disease or some newfangled dx for neurotic women. I have met many doctors who have never heard of orthostatic intolerance or dysautonomia, including cardiologists and rheumatologists.

The neuro was extremely reluctant to prescribe any biological therapies and begrudgingly gave me a script for fludrocortisone after I explained I was already taking all the recommended conservative measures with no effect. I was mostly bedridden at the time and had been for several months with severe hypovolemia, a pulse pressure of 20 and a standing HR going into the 150s even with a beta blocker. Anyway, I binned the script when I thought about the pros and cons of the extreme dangers of steroids vs. their marginal benefits.

The neurologist encouraged me to eat more salt and water (as if I hadn't thought of that before!), and then of course there was the ubiquitous & offensive prescription to exercise because exercise is wonderful in all instances and ameliorates all disease. I was actually told, as a bedridden patient who was struggling to get to the bathroom at the time, to go to a gym and hire a personal trainer. This really infuriated me.

I happen to have the requisite arrogance and scientific background to read the medical literature and discard ludicrous advice from medical doctors but what about those patients who don't? Following such "treatment plans" could maim them. Needless to say, I didn't follow this advice since any "exercise", such as slowly walking from the car to the hospital, crashed me severely.

It strikes me as a double standard that the burden of proof is so high for any potential biological therapy for ME whereas any moo-faced GP is allowed to hand out extremely serious medications such as antidepressants to anyone who may or may not need them. Virtually nothing clinically useful/actionable is known about the pathophysiological mechanisms of psychiatric illnesses or the mechanism of action of drugs used to treat them but that doesn't stop anyone from prescribing. Compare and contrast the extreme reluctance to give an ME patient a shot of B12 vs. the gung ho eagerness to give them antidepressants, a class of meds with potentially very profound effects and side effects.

Rant over.

 

[daisybell]

It seems to me that unless we get lucky with Rituximab or another such drug developed for another disease, our only hope is that the researchers talk and collaborate sufficiently to be able to put all the pieces of the jigsaw together. Which I am not sure I feel confident about as that may not be something they feel is in their best interests... It requires true altruism and non-competitiveness, which isn't something I've seen in academia. Being protective of the research doesn't help the big picture for us.

My dream would be all those researchers we follow sitting down together for several weeks, being totally honest about their work, thrashing out the differences of opinion and agreeing who will take which piece of research forward. And then meeting for another week every six months or so.... With of course someone independent of all the work who advises, challenges and thinks..

 

[NK17]

It seems to me that unless we get lucky with Rituximab or another such drug developed for another disease, our only hope is that the researchers talk and collaborate sufficiently to be able to put all the pieces of the jigsaw together. Which I am not sure I feel confident about as that may not be something they feel is in their best interests... It requires true altruism and non-competitiveness, which isn't something I've seen in academia. Being protective of the research doesn't help the big picture for us.

My dream would be all those researchers we follow sitting down together for several weeks, being totally honest about their work, thrashing out the differences of opinion and agreeing who will take which piece of research forward. And then meeting for another week every six months or so.... With of course someone independent of all the work who advises, challenges and thinks..

This is why IiME Invest in ME is so important and so well thought and organized.
As well as Dr. Kogelnik's OMF Open Medicine Foundation MERIT ME Roundtable on Immunology and Treatment.

 

[Jonathan Edwards]

ME is not recognized as a serious chronic handicapping disease by the authorities. Because it's not recognized by the authorities, they tell us (clinician, researchers and patients) to come up with solid proof and biomarkers of the organic nature of the disease.

I don't think that is quite right. To crack this I think it is important to see the problems for what they truly are. ME, maybe under the name of CFS, is recognised as a serious handicapping disease by all the doctors I know. 'Authorities' do not really come in to this. The doctors' view prevails. The problem is that most of the medical profession assume that CFS is insoluble. The solution is to change that perception by doctors. And thinking diseases are insoluble is usual. We all thought cancer was insoluble, and that rheumatoid arthritis was insoluble and that cardiac transplantation was science fiction - until people starting finding that they might not be. My friends who look after PWME would love to think it was soluble but they simply don't have any idea how it could be. I don't see wilful neglect so much as lack of imagination - which may be a shortcoming but not a crime.

I do agree that the assumption of insolubility is often flavoured by an assumption that ME is often caused by false beliefs or negative attitudes. And there has been a fashion for saying all of it is. But that would blow away like a feather if it was proved wrong. All that needs is something like the tensilon test for myasthenia gravis, which changed a psychosomatic illness into a muscle end plate one.

To find those evidences costs time and money, money that we certainly don't have.

It will not be cheap but I think the money can be found. My impression is that it is hardly surprising that ME has not been sorted out so far, considering how few people have been working on it with so little in the way of resources. What it needs most of all is not money but lots of people thinking about it as a soluble problem. I think that may be getting going.

What can we do, that hasn't been done yet?

Lots of simple basic things are there to do - I keep thinking of things while I am posting on these threads. Clues are probably lying around like leaves in November. We just need people to focus and share expertise and think 'soluble'.

@Jonathan Edwards are we missing something,

How are we going to change the system? How can we overcome this impasse?[/quote]

I got buttonholed byIiME because things were already changing. I got interested because people had already made the shift to 'ME is soluble'. That has not fed through yet, but I think it will.

 

[Leopardtail]

Yes, I have met her and am aware of her interests and work. I cannot pin down a formal treatment study for OI in ME yet. There is a mention on an MEA site of her talking about the 'possibility' of using fludrocortisone and midrodine but I am unclear as to whether she would use these herself much.

I found a presentation of her study in which they were trialled at both the Newcastle site and the conference organised by action for ME. I remember fludro being used, not so sure about midro. It boiled down to usual diagnosis, usual treatment. Since that was unremarkable I did not memorise every detail.