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

Leopardtail

Senior Member
Messages
1,151
Location
England
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.



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.



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?

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.
It's entirely about money.

All of those people 'working on the problem' have to subsist. Running five blood tests on each of sixty patients to test a hypothesis is very rapidly going to cost £9,000 if they only cost 30 each. Add say £15,000 per year subsistence while doing a phd we are already up to 55K without university fees,or other costs.

Doing research is an expensive business, there are very many useful hypotheses already, I have one myself. Getting access to funding for me to test it however is beyond a nightmare. Nobody wants to fund researchers without experience and to get that you need .... We need new minds on the job, funding for MRes candidates, Masters projects doing meta-analyses. Master projects in bio-informatics etc. What we lack is access for the new blood, the maverics, the room shakers, and the plodders who will do grunt work.

We have too many 'superstar egos' not enough original thought or diligent hard work. These superstars are not doing hard science, the three years of rigorous analysis that precedes the lab work.

Each individual system: bowels, nervous, cellular, endocrine needs circa a year of solid works as a minimum. There are more than 300 papers on catechols as Neurotransmitters before one even starts. Each issue in ME demands specialised knowledge of multiple systems. My special interest in ME requires in depth Mito knowledge, reasonable endocrinology, in depth Neuro-endocrinology, specialist knowledge of hormone receptors. I can run rings round my GPs, a top endocrine consultant, at least two leading ME specialists and still don't know enough. All that is needed to only understand the way the body generates energy and regulates that process. To stand a cats chance, we need ME specialists and multi-disciplinary teams, rather than specialists in a 'field of medicine' who dabble in it....

Everybody you speak to here has at least five or six significant dysfunctions probably none of which qualify the 2STD rule.

I know it now me who's being the awkward customer or defensive patient. What I am trying to encourage is a 'fully rounded view' that is not too skewed by your prior experience. I saw a clear declaration that you suspected multiple groups, what I am trying to foster now is the logical extension - you can't assume a single dysfunction causes all of our diseases, but you also can't assume that singly for one person. It's an unsound hypotheses with no data to support it.
 

heapsreal

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That point would cover people who actually do not get ill with an infection, for whatever reason.

The chances of you not getting a cold, not getting any infection are pretty remote. E.g. if you live with somebody who gets a cold virus, so do you. If you have a good immune system your body kills it, and you don't get the illness that goes with it.

What we can't tell apart (especially with ME) is whether you don't have the cold at all (because your immune system is working) or you have it but don't show clear symptoms (because your immune system is active enough to keep you alive, but not doing the things that produce symptoms).

Because our immune systems still work, but often don't work well, it makes dealing with infection or even working out if we have one a nightmare for doctor and patient alike. I can only tell because of slight changes in body temperature and changes in my blood sugars.

This could be the reason behind the syndrome in HIV called IRIS(immune reconstitution inflammaotry syndrome) once they start anti retroviral treatment and also the symptoms that many call a die off reaction when cfs/me start antivirals or even abx??
 

heapsreal

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Pain is completely useless as a symptom.

Im going to disagree with you there. I have different types of headaches and depending on how they feel can tell me alot.

I have had alot of issues with frontal sinusitis and its hard to pick up at first, with this the fatigue is of a different nature to cfs/me in general but just as bad if not worse at times. I differentiate it from other issues by the pain. with sinusitis i get the pain across the forehead as it worsens then i start get pain under the eyes and face in general. this pain is worse after sleeping and lying down and i get hypertension from this headache. I generally get the post nasal drip but when sinusitis worsens the post nasal drip can stop? After alot of trial and error, i can tell when the sinusitis is becoming an issue and commence abx which start to sort the problem in about 3 days, ie reduced pain and fatigue and normalising of blood pressure.

Another type of headache i get, i call a viral headache or my cmv headache, i cant confirm this with testing but i get these after about 2-4 weeks off antivirals. The headaches i find are a global type of a headache, not severe, maybe a painful brain fog?? and my cognitive ability drops like a dead stone. All these symptoms start to improve on antivirals within about 3 days also. I dont know if its the antiviral action or its supposed anti-inflammatory effects on microclial cells. Maybe after long term antiviral which i have done has dropped my viral load enough that when i pick up on these symptoms and commence treatment, im nipping it in the bud??

The above is individual for me and can only confirm that these are the issues after treating them with the appropriate med. Its taken a long time for me to be able to work out what these symptoms are from, but after many episodes of these headaches and symptoms and treating them i have been able to work this out. Its very simplistic and probably unscientific but it works. I have had these infections confirmed by my doctor in the past but i dont run back to him when these occur as i now have a grip on it.

My doctor says its reasonable to suspect these infections as i have chronic neutropenia, chronic lymphocytosis and the low nk function.
 
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15,786
The problem I see with ME is that we don't even have confidence that is a homogeneous clinical group.
Nonetheless, if any particular ME patient has the same symptom and associated biomarker for that specific symptom, when compared to a group in which that symptom and biomarker have been studied, it should be a relatively simple matter to piggy-back off of that research. If non-ME hypotension patients with low blood volume have been found to benefit from a certain treatment, and there's no specific contraindication, it seems very reasonable to try the same treatment for an ME patient with hypotension and low blood volume.

Of course, the more shared biomarkers there are for the patient with the symptom and the appropriately researched group, the better ... but again, that means somewhat rigorous testing for the ME patient :p

We don't have to be the same as each other. And when it comes to OI, I know we definitely aren't. Some of us have orthostatic low pulse pressure with or without low norepinehprine. Some have typical orthostatic hypotension with low blood volume. Many have delayed orthostatic hypotension (NMH). Some have orthostatic tachycardia combined with orthostatic hypertension and high norepinephrine. And these are all properly defined ME patients with PEM, not an inherently heterogenous group such as would be created with the Oxford criteria.

But despite our internal dissimilarities, most patients have strong similarities to better researched external patient groups regarding single symptoms. It's not the ideal foundation for building a treatment plan, but I think it's better than throwing the legos (and patients) out into the sea because we can't achieve perfection yet.
 
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15,786
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.
I agree completely. Sitting up all day eats into my absurdly small daily allotment of energy. Yet I'd rather be able to sit up all day even if it means I can no longer have the energy to spare for a few minutes of gardening, or a bit of simple baking, etc.

On a similar note, being bed-bound or couch-bend forces us to preserve energy. But it can also make it impossible to get to doctor appointments, to engage in appropriate hygiene, or to feed ourselves. Hence that potentially "protective" mechanism can also be even more harmful in other ways.

I do have priorities for which I wouldn't make that trade-off of being able to sit up all day. But at this moment I find it to be highly beneficial for my ability to enjoy life somewhat. And when there is the potential of such a trade-off, I think that's an informed decision which patients need to make with the various possibilities in mind and hopefully with the guidance and assistance of a qualified doctor.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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.

A lot of of us have neither time nor money, but are struggling to work to keep the wolf from the door, yet unable to earn enough to afford things that could save us time and energy (e.g. cars, proper heating), and many also have caring responsibilities. Not to mention the enormous amounts of time and energy that some of us have to expend on trying to get welfare benefits, home support, etc.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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.

Superb, eloquent rant!

You forgot to mention the continuing prescription of antibiotics when it is absolutely pointless and has led to the sometimes-deadly problem of antibiotic resistance.

Evidence-based medicine...?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Doing research is an expensive business, there are very many useful hypotheses already, I have one myself. Getting access to funding for me to test it however is beyond a nightmare. Nobody wants to fund researchers without experience and to get that you need ....

I'm a bit confused now - have you started a research project without funding then? You had said you were "doing your first piece of research now." I'm not clear about what qualifications you have, but I don't think you're likely to get funding for research unless you are part of a team or an established researcher. If only it were that easy. You will probably need to do it through a university via their particular PhD criteria/prospectuses. To do a PhD you may require a Masters degree first. For example, the Open University have details of their research degrees here.

Each individual system: bowels, nervous, cellular, endocrine needs circa a year of solid works as a minimum. There are more than 300 papers on catechols as Neurotransmitters before one even starts. Each issue in ME demands specialised knowledge of multiple systems. My special interest in ME requires in depth Mito knowledge, reasonable endocrinology, in depth Neuro-endocrinology, specialist knowledge of hormone receptors. I can run rings round my GPs, a top endocrine consultant, at least two leading ME specialists and still don't know enough.

We could all be said to have a specialist interest in ME, and a lot more knowledge about ME than our doctors. It is not clear to me how you differ from many others here.

And no one ever knows enough. One should never stop learning as long as one has the ability.
 

worldbackwards

Senior Member
Messages
2,051
I agree completely. Sitting up all day eats into my absurdly small daily allotment of energy. Yet I'd rather be able to sit up all day even if it means I can no longer have the energy to spare for a few minutes of gardening, or a bit of simple baking, etc….
I do have priorities for which I wouldn't make that trade-off of being able to sit up all day. But at this moment I find it to be highly beneficial for my ability to enjoy life somewhat. And when there is the potential of such a trade-off, I think that's an informed decision which patients need to make with the various possibilities in mind and hopefully with the guidance and assistance of a qualified doctor.
Surely if you can sit up all day, that has it's health benefits in and of itself, it's not just a question of enjoyment, expediency, etc. If the energy is there, lying down isn't helpful in itself I reckon, just a method of self-preservation when rest is required to recharge. I write as someone improving (who's been in bed a long time), who finds the more I can sit up as things go on, the better I tend to feel. Not criticising, just interested in the different ways people manage stuff and find these things work out.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
And no one ever knows enough. One should never stop learning as long as one has the ability.

This statement I agree with completely. Its also why we need specialized institutes for ME research ... teams of experts, cooperating with other teams, and collaborating with teams around the world. This we are finally starting to see. The change is very slow though, almost glacial. Ice ages have hit faster.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Nonetheless, if any particular ME patient has the same symptom and associated biomarker for that specific symptom, when compared to a group in which that symptom and biomarker have been studied, it should be a relatively simple matter to piggy-back off of that research. If non-ME hypotension patients with low blood volume have been found to benefit from a certain treatment, and there's no specific contraindication, it seems very reasonable to try the same treatment for an ME patient with hypotension and low blood volume.

Of course, the more shared biomarkers there are for the patient with the symptom and the appropriately researched group, the better ... but again, that means somewhat rigorous testing for the ME patient :p

We don't have to be the same as each other. And when it comes to OI, I know we definitely aren't. Some of us have orthostatic low pulse pressure with or without low norepinehprine. Some have typical orthostatic hypotension with low blood volume. Many have delayed orthostatic hypotension (NMH). Some have orthostatic tachycardia combined with orthostatic hypertension and high norepinephrine. And these are all properly defined ME patients with PEM, not an inherently heterogenous group such as would be created with the Oxford criteria.

But despite our internal dissimilarities, most patients have strong similarities to better researched external patient groups regarding single symptoms. It's not the ideal foundation for building a treatment plan, but I think it's better than throwing the legos (and patients) out into the sea because we can't achieve perfection yet.
This keeps coming back to one simple point - it all starts with normal testing - the rest flows from there.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
This could be the reason behind the syndrome in HIV called IRIS(immune reconstitution inflammaotry syndrome) once they start anti retroviral treatment and also the symptoms that many call a die off reaction when cfs/me start antivirals or even abx??
Many doctors do think that, I have heard it called the 'Herxheimer reaction' more generally british nurses call it 'healing shock' to describe a wide variety of reactions.

If you have a variable immune system (e.g. works autumn & spring, crashes mid winter) then IN THEORY you could get die off when it improves. No research I have seen though (in ME).

The short version is you get immune symptoms only when the immunity is working and active.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
This statement I agree with completely. Its also why we need specialized institutes for ME research ... teams of experts, cooperating with other teams, and collaborating with teams around the world. This we are finally starting to see. The change is very slow though, almost glacial. Ice ages have hit faster.
Could not agree more we need specialised researchers (my point) and specialised institutes (yours).

And yes in agreement with @MeSci everybody involved constantly questioning their/our own viewpoints is a must. Like everybody else I was looking for a single smoking gun, I came to phoenix dominantly to get 'widespread patient experience' and rapidly had to realise that there are massive differences between us. She in particular turned a few ideas on their head.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
I don't think I do differ from others here. Many have vast pools of knowledge. The point is more that so many systems being affected in general and the fact that so many aspects of symptomatic presentation or indeed lab results may be influenced by multiple systems. Conventional research models (and medicine) however tend to strongly specialise people on systems not symptoms. Just getting a basic model of ME requires an established researcher to do a vast of reading on fine points of systems they have a basic understanding of. Failure to do leads to bad study design that raises more questions than it answers.

My response to professor Edwards that finance is a major issue thus revolves around the central problems that: we need fresh minds looking at this who come with no system centric pre-conceptions and a broad view, and that even those with experience in the field must learn a staggering amount of stuff. It took more than six times the amount of time for my understanding of ME to be a quarter as good as my understanding of diabetes.

My point regarding my level of expertise was even at my level - I don't know enough. I was referring only to the specific bit of ME that I am researching and even that involves at least four systems. Whichever part of ME you study, the same issue applies - keeping overview. The field of diabetes is far more successful because they are many PhD studentships awarded in every country annually. To have the numbers, you have to supply the funding. It's too complex to do part time.
PS those 'multi-taskers' with phenomena focussed expertise are needed as well as those highly experienced in one system, not instead of.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I did the first year of it self funded as I said a number of times on the forums. As you have already been told I cannot discuss my funding, stop asking publicly..

You can't expect everyone to know or remember everything you say in all threads - you post a lot of messages. And you were talking about funding. I don't recall being told that you could not discuss funding. Never mind.
 

Marco

Grrrrrrr!
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2,386
Location
Near Cognac, France
It's dominantly meta-analysis at this point with some pathology to test hypotheses.

So if its a meta-analysis what metrics are you using as a quality screen? "with some pathology to test hypotheses" - I've no idea what that means?

Sequence as follows:

First phase involved building a novel hypothesis for an aspect of the disease and testing on a small number of individuals.

OK - convenience sample?

As is so often the case hypothesis needed some review when the data came in - it was about 75% correct but one fundamental part was proven wrong.

OK

I am now working with professors at two universities and two active clinicians to perform a much more rigorous and detailed meta-analysis of the existing research in order to build a 'gedanken model' of hypothesis v2, and also to work out which of two possible approaches would be more cost effective to research first. I may be doing the analytical stuff, but depend on support from others to get the procedural bits done.

You must be fairly persuasive to rope in such support without funding. 'gedanken model'?

I am hoping #4 in which we retry with 'live patients' will happen September 2015.

Sorry,but what condition were the previous patients?;)

One of the reasons I ask so many questions in Phoenix, apart from wishing to help, is that spotting the symptoms patterns allows me to separate the sub-groups it might be right for, vs the ones for whom it may be wrong. Like Professor E - I am doubtful any single Pathology fully explains our whole group.

Right now the focus is academic not medical, it's about weeding out fundamental processes. There is a constant cyclic process of review literature, hypothesize, test, review again. As Alex put it, the speed is glacial.

Well, good luck however you're going about it. It might speed the process up though if you gave some sort of general description of your theory for us to kick around. Some pretty smart people contribute to these discussions not to mention Prof Edwards.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Smiles,

It's a completely novel hypothesis for the process in which hormone levels vary in us, which might iron out some of the 'eraticism' seen in our various results. It's about how systems interact rather than he separate systems. That's a large part of why people are interested. I am bringing at least one field of science that has never been involved in ME. That novelty is why people are interested, but I have also been warned to 'fly below the radar' in order to make it more desirable for publication. It's no good doing great work if no doctor gets to see it.

As far as the live patients jest is concerned: 'Just barely' is the answer many would give.

There are medics/scientists/researchers on Phoenix with whom I am discussing it, but not on public forums the obvious reason - it would be publication.

I will say more when I have reached an appropriate point, for now I don't want to spook the team that's helping me... If we are able to split the analysis in to separate papers (something we are looking at) then I will be able to say more sooner....

for now though, you will have to be patient.

Fair enough. I'm working on something with a view to publication myself but have been posting the development of the model on-line for some time now as well as discussing openly with anyone interested. Whether of not that would affect any publication (again if anyone is interested) is a moot point. I was more interested in PWME's feedback as a means of testing the model.