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

[Hip]

What I find hard to fathom about the NHS is that it does not seem to take on board any of the successful pharmaceutical treatments used by leading ME/CFS doctors (most of whom are in the US).

For example, Valcyte treatment has been particularly effective for some ME/CFS patients. Valcyte is backed up by studies, and is employed by several ME/CFS doctors; yet as far as I am aware, the NHS do not offer Valcyte as an ME/CFS treatment. The antiviral Famvir has also showed some milder efficacy for ME/CFS (though it is is not as good as Valcyte), and this too I don't think is being used by the NHS for ME/CFS.

There are various other pharmaceutical treatments that can be employed for ME/CFS: Maija Haavisto's book "Reviving the Broken Marionette" details many such pharmaceutical treatments (free abridged eBook version here).

And there is also low-dose naltrexone, vitamin B12 injections, methylation supplements, all of which can have benefits for subsets of ME/CFS patients.

But the NHS shows no interest in any of this. I cannot fathom why. We are not a third world country, and yet I soon figured out from speaking to my GP that there was nothing on offer from the NHS other than GET/CBT. So like many ME/CFS patients, I decided to systematically try out various pharmaceutical drugs and supplements on my own initiative (a process I am still engaged with).

It is a bit of a hit and miss affair when trying out drugs and supplements for ME/CFS: as we all know here, many don't help and some can even make you worse; so it does take a lengthy process of trial and error to uncover the treatments that are helpful for each individual with ME/CFS.

In this respect. I can understand why the NHS may not want to spend the time and effort on ME/CFS patients, trying out dozens of drugs and supplements. ME/CFS is not a simple "one size fits all" disease like say hypothyroidism, where once the diagnosis is made, the treatment is usually the same (hormone replacement). ME/CFS is more complex and time consuming to treat; but the NHS could at least offer some basic pharmaceutical treatments that have good reputations for working for many ME/CFS patients, such as Valcyte and the others I mentioned above.

 

[Valentijn]

And there is also low-dose naltrexone, vitamin B12 injections, methylation supplements, all of which can have benefits for subsets of ME/CFS patients.

But the NHS shows no interest in any of this. I cannot fathom why. We are not a third world country, and yet I soon figured out from speaking to my GP that there was nothing on offer from the NHS other than GET/CBT. So like many ME/CFS patients, I decided to systematically try out various pharmaceutical drugs and supplements on my own initiative (a process I am still engaged with).

If your British GP isn't familiar with ME/CFS, they'll probably look to NICE for information on how to proceed. And that's where they'll be advised against testing for much of anything, and also be advised against trying many of the more likely treatments. According to NICE, doctors are not supposed to even test ME patients for B12, folate, or ferritin status unless the basic blood tests come back abnormal. And @Jenny 's doctor was violating those same guidelines by trying an antiviral.

One big advantage I have in the Netherlands is that there aren't any officials guidelines to withhold most of the obvious tests or treatments. Instead we just get widespread ignorance from GPs, mild suggestions to exercise more from most specialists (followed by genuine surprise when told that exercise makes us sicker), and outright derision and hostility from neurologists. But at least the entire health system isn't actively working against us in unity

 

[Hip]

If your British GP isn't familiar with ME/CFS, they'll probably look to NICE for information on how to proceed. And that's where they'll be advised against testing for much of anything, and also be advised against trying many of the more likely treatments.

Sure, most GPs will follow the NHS guidelines, but I am asking why the NHS at its higher organizational level does not investigate and adopt ME/CFS treatments such as Valcyte, etc, thus making the prescription of Valcyte, etc official NICE policy.

I am sure the NHS investigates and adopts (if affordable or cost effective) all the latest treatments for various other diseases. So why doesn't it do this for ME/CFS?

 

[Valentijn]

I am sure the NHS investigates and adopts (if affordable or cost effective) all the latest treatments for various other diseases. So why doesn't it do this for ME/CFS?

Politics and dogma. I can't imagine that anyone really believes that withholding treatment saves money, except insurance companies which can pass the costs of long-term illness and disability to other parties.

 

[Sasha]

Sure, most GPs will follow the NHS guidelines, but I am asking why the NHS at its higher organizational level does not investigate and adopt ME/CFS treatments such as Valcyte, etc, thus making the prescription of Valcyte, etc official NICE policy.

I am sure the NHS investigates and adopts (if affordable or cost effective) all the latest treatments for various other diseases. So why doesn't it do this for ME/CFS?

I tried to get Valcyte on the NHS having had a high antibody titre to HHV-6 on private testing, which would have got me treated with it in the US by specialists such as Dr Montoya. I got a referral to an NHS infectious diseases consultant who took seriously the possibility that I might have HHV-6 and tested me for it by PCR, and then again when that test came up negative, at my request. When that test came up negative I was refused Valcyte, even though I took published papers showing that people have died from HHV-6 infections of the heart that didn't show up in blood tests (the theory being that after a while, HHV-6 moves out of the blood in detectable numbers and into tissue).

The evidence on Valcyte for high HHV-6 titres in ME isn't overwhelming (I've read all the papers in very great detail) but I'd say it's suggestive and was willing to give it a try. It's an expensive drug (a six-month course paid for privately would be about £10k) and carries serious risks that require monitoring of kidney and immune function. In the absence of any treatment at all for 30 years and my continued severe disability, I'd have like to have tried it but because my tests were negative by PCR (the papers I sent in advance about this test not being definitive had no impact and I don't know why), I was refused.

The team who dealt with me were very sympathetic, and completely convinced that ME is an organic disease. The consultant told me that they often discuss ME at the pub, trying to think how they can help patients. I couldn't get a straight answer about why they wouldn't take a risk with me (I pressed it as far as I reasonably could). They said that if there was ever a trial that they were involved in, I'd be first in the queue. And that was it.

Perhaps an issue in this risk-avoidance is a lack of expertise in ME. By definition, every treatment we're going to want to try is going to be off the back of evidence that conventional specialists (infectious diseases, immunologists, etc.) aren't going to be familiar with because if it was already mainstream, we'd already be getting treated. Apparent dismissal of the papers on HHV-6 tissue infection on autopsy while blood was negative by PCR is perhaps an example of this.

I thought it pretty amazing that two oncologists (Fluge & Mella) would be interested enough in ME to follow through a serendipitous finding about it but I read recently that one of them has a relative with the disease. It seems that many of our specialists have come to be specialists for the same reason and I wonder if most consultants would have followed up without that special interest. Perhaps a clinician would need to have studied ME deeply before he/she would feel confident enough to start experimenting. Perhaps we just don't have enough specialists.

This has been a very interesting discussion, by the way. I wish we could identify what the blocks are to experimentation so that we could see whether there's anything that we could do about them. And as always, I'm very grateful to you, @Jonathan Edwards, for engaging with us in this discussion. We know what we want and experience the roadblocks from the patient's side, but you know how the system works and understand how clinicians think and what their culture is.

 

[Sasha]

@Jonathan Edwards - perhaps this is slightly off-topic, but as we're discussing the possibility of NHS docs trying things out (whether in N=5 trials or more broadly), I'm wondering if you came across any UK docs wanting to try things at the IiME conference. We're aware of so few ME docs in the UK - I'm wondering if more docs are quietly developing a clinical and research interest but below our radar. That IiME conference seems potentially a particularly powerful way of bringing new blood in.

 

[MeSci]

It is a bit of a hit and miss affair when trying out drugs and supplements for ME/CFS: as we all know here, many don't help and some can even make you worse; so it does take a lengthy process of trial and error to uncover the treatments that are helpful for each individual with ME/CFS.

In this respect. I can understand why the NHS may not want to spend the time and effort on ME/CFS patients, trying out dozens of drugs and supplements. ME/CFS is not a simple "one size fits all" disease like say hypothyroidism, where once the diagnosis is made, the treatment is usually the same (hormone replacement). ME/CFS is more complex and time consuming to treat; but the NHS could at least offer some basic pharmaceutical treatments that have good reputations for working for many ME/CFS patients, such as Valcyte and the others I mentioned above.

Yet many seem to be more than happy to try numerous different treatments for depression and IBS. I had both in the early stages of ME (the depression due to a traumatic incident, poverty, malnutrition and illness), and was prescribed a range of drugs, none of which helped, at least not without side-effects that were (almost) as bad as the problems or even worse.

Maybe they think that depression and IBS are simple conditions, which they are not. Maybe they think they understand them but don't.

(I fixed, or at least greatly improved, the IBS through diet after suffering on and off for most of my life - up to 50 years!)

I guess ME is especially mysterious - even to us - due to the lies spread about it and to the heterogeneity.

 

[MeSci]

According to NICE, doctors are not supposed to even test ME patients for B12, folate, or ferritin status unless the basic blood tests come back abnormal.

Having obtained copies of my records after a long battle (getting blood out of a stone might have been easier) I have found numerous biochemical abnormalities in my results. The doctors just seem to have ignored most of them.

 

[MeSci]

Sure, most GPs will follow the NHS guidelines, but I am asking why the NHS at its higher organizational level does not investigate and adopt ME/CFS treatments such as Valcyte, etc, thus making the prescription of Valcyte, etc official NICE policy.

I am sure the NHS investigates and adopts (if affordable or cost effective) all the latest treatments for various other diseases. So why doesn't it do this for ME/CFS?

If only it did investigate and adopt the latest treatments for anything!

As for NICE, this 2007 article may be of interest. The original article (linked to at the bottom of the page) is here.

There was a recent message on PR pointing out that NICE is now under the control of ? the NHS?

 

[Jonathan Edwards]

So the key issue seems to be – along the lines of Sasha’s heartfelt and very reasonable plea – why does the NHS not at least try some medical rather than psychotherapeutic approaches?

One oddity worth mentioning to get it out of the way is that part of the reason is an anomaly in the way treatments are approved. Drugs have for a long time required licenses, which require trials. The strange thing was that once licensed for one disease they could be used by a doctor for any other, even with no proof of benefit. That has mostly stopped with NICE and local pharmacy rulings, but there are still lots of situations where nobody notices which disease is being treated. In contrast, ‘procedures’ or ‘devices’ have had much looser approval rules. That has covered physiotherapy, psychotherapy, wheelchairs and, weirdly, radioactive chemicals, which for some reason are devices rather than drugs.

Virtually nothing a physiotherapist does has been adequately tested by trials and I suspect the same applies to psychotherapy to some extent. There may be two reasons why trials are not asked for. Firstly, if they were done, all physiotherapists might be out of work. Secondly, it is more or less impossible to do standard blinded trials of personally delivered therapies. These are not adequate excuses, so the provision of inadequately proven psychotherapy but not inadequately proven drugs is not justified, but that may be how it has come about.

Everyone will have noticed that I said ‘inadequately proven drugs’. So I need to say why, and will start a fresh post to get to the point:

 

[Jonathan Edwards]

I will go back to

I have a feeling I'm missing your point here - is there a discussion on something specific that we ought usefully to be having? I agree there are some very knowledgeable POPR (not me, alas!) and if there's something they should be focusing on, I'm sure they'd be up for it.

No, I am talking about all the discussion, but the nub is the thrashing out of arguments that can be used to convince health care systems like NHS to pursue investigations and treatments that look as if they are worthwhile. Along with, as Alex says, doing the needed science, this must be the most valuable thing PR can do and I am sure it has the potential to achieve it. My key point is that we have to be even handed. I entirely agree that CBT is no solution to the problem. It is inadequately validated and the dependence on the individual therapist is totally unaccounted for. It may help some people but it may also distress and damage others. But to ask NHS doctors to try other things there needs to be something better than that.

I hear many people on PR suggesting using various drugs and supplements. However, when I attended the IiME research colloquium I am fairly sure there was no consensus amongst the scientists that we have adequate validation for any of these treatments. These were scientists who work on the principle that if a result is to be worth taking seriously it is the responsibility of the person claiming the result to publish the evidence in a form that can be adequately analysed by others. It does not need to be an RCT. It does not even need to be published in a journal. But it has to be made available in a form that others can assess critically. My understanding is that for the drug treatments often suggested either that has not been done, or, as for valcyte, it has and the result has been unconvincing. (I recognise that trials can get the wrong answer because of poor design but there is then a responsibility to do them properly.)

The problem is that the NHS is a mutual insurance system set up by the British public for the benefit of all. Its resources have to be limited if people are to get good value. They have been limited too much, but nobody can expect an insurance system to provide something that has not been adequately justified. (I realise that PWME have had a raw deal but to be honest it is not much different if you have cancer or diabetes - the system has broken down for everything.) I have come to this field with a completely open mind and no vested interest in anything in particular because I am no longer involved. So far I have not seen the evidence for other treatments in a form I think is adequate. Maybe the first thing is for people on PR to persuade Me! If I am persuaded that something works we instantly have a biomarker (drug response) to build research on.

There are also some practical issues Sasha raised, which I will deal with next.

 

[Jonathan Edwards]

Sasha raised several reasonable practical points about ways the NHS could at least dip its toe in to trying things out.

One is the suggestion of just trying a treatment on an open basis and 'auditing' how things go. The problem here is that with the placebo effect and no objective measures for ME it is very hard to know what you could conclude. That is why I suggested treating five people and then if there is any reason to think it might help, doing a proper controlled study of some sort. If the effect is dramatic a small controlled study will do. If the effect is slight it will be even more essential to do a controlled study to show a real effect and it will need to be larger. The problem as much as anything is the misplaced enthusiasm of doctors and therapists, who want to believe that their treatment works (familiar?) and the reality is that this drowns out any hope of getting reliable data from audits.

The second suggestion is to do an 'Ebola' and try something dramatic for someone in deep trouble. We actually do this within the NHS quite a lot, even if it can mean writing fibs in the records about the diagnostic category etc. I have treated someone with polymyalgia with rituximab in that way. I have used IV immunoglobulin in that way. My RA trial was a bit like that. And if I was now still in practice and a routine part of that practice was CFS (which it was not because colleagues specialised in that but let us say it was) I would fight to get rituximab for a severe ME case if I thought on balance that it was the right thing to do. It might involve going through all sorts of hoops like deliberately not getting a result with a week or two of methotrexate first - my colleagues now have to do all sorts of creative things to get the treatments they need for patients. I won't say any more, but they do try. But because of all the issues about objective measures and sensitivity to drugs in ME even I would have a hard time really being sure I should recommend this to someone. Which is why I do not expect colleagues to do it - one can only expect it to be done in the format of a trial that can be evaluated by others. And even that is taking time because we want to have the best chance of getting a result that gives us a 'quantum leap' in evidence.

Then various people have raised the issue that doctors may not try options in CFS, because it is so heterogeneous in its response. This may be true but in fact rheumatoid arthritis was exactly like that until recently. We had about 6 drugs that worked a bit, or only occasionally worked very well, and it was impossible to know which was the best for any given person. So we worked our way through the options. I do not think this is the major stumbling block.

In the end I think the major stumbling block is that doctors simply have no sense of any logic to how they might try treatments because there is no agreement on what is wrong in ME. The physiological pathways involved may become clear quite soon, with various leads from research groups on muscle, brain, immunity etc. but as yet there is still not the consensus we need. So my hope is that all this frustration is actually going to become a thing of the past quite soon, as it has done for RA.

 

[Jonathan Edwards]

@Jonathan Edwards - perhaps this is slightly off-topic, but as we're discussing the possibility of NHS docs trying things out (whether in N=5 trials or more broadly), I'm wondering if you came across any UK docs wanting to try things at the IiME conference. We're aware of so few ME docs in the UK - I'm wondering if more docs are quietly developing a clinical and research interest but below our radar. That IiME conference seems potentially a particularly powerful way of bringing new blood in.

On that specific point my impression is that there are several UK physicians and researchers a little below the radar very interested in ME - and that is just the ones with a link to IiME - there are others. I think the strength is at a stage a bit distant from the actual clinic at present but people like Amolak Bansal have a foot in both camps.

 

[Esther12]

I think I'm with Jonathan Edwards here, and am pretty sceptical of all the things that are claimed to treat 'CFS'. I know different people have reported finding different things helpful, and there are treatments for related issues, like migraines or pain, that have good evidence for efficacy though.

When it comes to experimental treatments, and patient's wanting to try things where there is a lack of good evidence, informed consent is really important.

If a drug is to be offered to patients, they need to be fully informed of problems with any evidence for efficacy. If only non-blinded trials have been carried out, or no placebo control, problems with response bias need to be explained. If claims about 'recovery' are made, they must be made on the basis of a reasonably defined criteria for recovery.

And the same is all true for biopsychosocial stuff. It is wrong to make claims about an intervention's ability to improve symptoms when these claims are based on non-blinded trials and problems like response bias are not explained. It is wrong to re-defined 'recovery' in the way that PACE did, so that patients could be classed as 'recovered' even when their self-reported levels of disability were higher than those the trial's entry criteria, which required "severe and disabling fatigue".

Personally, having seen how medicine tends to treat those with CFS, I don't want to take part in experimental treatments as they seem more likely to make things worse than better. I totally understand and respect that other people have different preferences, but think that those preferences can only be properly expressed through a system which recognises the importance of informed consent.

I think that this is where the arguments and evidence is most on the side of patients too. Unfortunately, it seems that there isn't really any powerful group that can be connected with over concerns about the way claims about the efficacy of CBT/GET have been exaggerated. Within medicine, there's a lack of people with a vested interest in arguing that we don't really know what we're talking about, and respected claims of expertise are unfounded.

 

[MeSci]

The problem as much as anything is the misplaced enthusiasm of doctors and therapists, who want to believe that their treatment works (familiar?) and the reality is that this drowns out any hope of getting reliable data from audits.

Patients too can be blinded by hope, especially in an illness that is so neglected. We clutch at proffered straws with enormous hope, as they may be all we have. We may think we are improved when we are not, due to desperation and longing to be well, so measures of success have to be objective ones, although it can also be useful to correlate these with our perceptions, which are often accurate.

Like others, I am extremely grateful for your freely-given expert knowledge and inside information.

 

[Sasha]

No, I am talking about all the discussion, but the nub is the thrashing out of arguments that can be used to convince health care systems like NHS to pursue investigations and treatments that look as if they are worthwhile. Along with, as Alex says, doing the needed science, this must be the most valuable thing PR can do and I am sure it has the potential to achieve it.

Thanks for addressing my rant so thoroughly! This is all very interesting, including the above point. Maybe we need a working group on here, to do what you suggest.

I hear many people on PR suggesting using various drugs and supplements. However, when I attended the IiME research colloquium I am fairly sure there was no consensus amongst the scientists that we have adequate validation for any of these treatments. These were scientists who work on the principle that if a result is to be worth taking seriously it is the responsibility of the person claiming the result to publish the evidence in a form that can be adequately analysed by others. It does not need to be an RCT. It does not even need to be published in a journal. But it has to be made available in a form that others can assess critically. My understanding is that for the drug treatments often suggested either that has not been done, or, as for valcyte, it has and the result has been unconvincing. (I recognise that trials can get the wrong answer because of poor design but there is then a responsibility to do them properly.)

I agree about where the responsibility for reporting lies, and agree that the RCT results for Valcyte were disappointing (they came out shortly after my consultation). And I'd agree in general that there isn't sufficient validation for any treatment yet to roll it out across the NHS but I'm not so sure that there isn't sufficient validation for some therapies for someone to do an N=5 (methylation has an RCT behind it, as does Ampligen, for example).

Also, even if the research is weak (as in clinical audits, which I agree are much weaker than RCTs), or just based on anecdotes from patients, the good-quality research has to start somewhere. There may not be any individual scientist claiming a result for a particular intervention (or claiming it very effectively or pushing for it to be investigated further very assiduously) but that doesn't mean that an NHS clinician who thinks it promising couldn't do the kind of N=5 study that you mention. Someone somewhere needs to take the initiative. The OMI, for example, were doing a high-quality study of Moringa oliefera off the back of patients' experiences (though I understand the trial stalled when the manufacturer changed the formulation).

The problem is that the NHS is a mutual insurance system set up by the British public for the benefit of all. Its resources have to be limited if people are to get good value. They have been limited too much, but nobody can expect an insurance system to provide something that has not been adequately justified.

In terms of rolling it out across the NHS, I agree, but I do think that N=5 studies would be a drop in the ocean and easily justified given the burden of chronic, severe, completely untreated disability in a quarter of a million patients.

So far I have not seen the evidence for other treatments in a form I think is adequate. Maybe the first thing is for people on PR to persuade Me! If I am persuaded that something works we instantly have a biomarker (drug response) to build research on.

There's a challenge, if ever I heard one! There are people here much more familiar with trial evidence than I am. Dr Bansal said at the IiMe conference that he thought the evidence for immunoglobulin was at least as good as for CBT/GET (low benchmark, I know) but that his repeated requests to use it had been rejected. I don't know if it's been trialled.

 

[Sasha]

One is the suggestion of just trying a treatment on an open basis and 'auditing' how things go. The problem here is that with the placebo effect and no objective measures for ME it is very hard to know what you could conclude. That is why I suggested treating five people and then if there is any reason to think it might help, doing a proper controlled study of some sort. If the effect is dramatic a small controlled study will do. If the effect is slight it will be even more essential to do a controlled study to show a real effect and it will need to be larger. The problem as much as anything is the misplaced enthusiasm of doctors and therapists, who want to believe that their treatment works (familiar?) and the reality is that this drowns out any hope of getting reliable data from audits.

I agree they're not the best. I'd like to see actimeters used routinely in ME research to give pre- and post-measures as a minimum but even that's not going to control for a placebo effect.

The second suggestion is to do an 'Ebola' and try something dramatic for someone in deep trouble. We actually do this within the NHS quite a lot, even if it can mean writing fibs in the records about the diagnostic category etc. I have treated someone with polymyalgia with rituximab in that way. I have used IV immunoglobulin in that way. My RA trial was a bit like that. And if I was now still in practice and a routine part of that practice was CFS (which it was not because colleagues specialised in that but let us say it was) I would fight to get rituximab for a severe ME case if I thought on balance that it was the right thing to do. It might involve going through all sorts of hoops like deliberately not getting a result with a week or two of methotrexate first - my colleagues now have to do all sorts of creative things to get the treatments they need for patients. I won't say any more, but they do try. But because of all the issues about objective measures and sensitivity to drugs in ME even I would have a hard time really being sure I should recommend this to someone. Which is why I do not expect colleagues to do it - one can only expect it to be done in the format of a trial that can be evaluated by others. And even that is taking time because we want to have the best chance of getting a result that gives us a 'quantum leap' in evidence.

Very interesting! I had no idea all that kind of creative stuff was going on.

@ukxmrv posted some years back (I think) that in London, she and other PWME attending a particular NHS specialist used to get immunomodulatory drugs and many did well on them, until the doctor retired and the new one had a different attitude. I wonder if we've lost opportunities for experimentation with NICE. I wonder if that clinic could have done something to have produced meaningful data on the effectiveness of those drugs but, given your points about audits, maybe not (or not enough to be convincing, anyway).

In the end I think the major stumbling block is that doctors simply have no sense of any logic to how they might try treatments because there is no agreement on what is wrong in ME. The physiological pathways involved may become clear quite soon, with various leads from research groups on muscle, brain, immunity etc. but as yet there is still not the consensus we need. So my hope is that all this frustration is actually going to become a thing of the past quite soon, as it has done for RA.

That's got to be our hope. I think someone already mentioned some very interesting work by Gordon Broderick, on Cort's blog today:

http://www.cortjohnson.org/blog/201...ome-amenable-intervention-dr-broderick-talks/

 

[rosie26]

I liked Dr Broderick comments "you will never understand a complex disease like ME/CFS unless you look at it entirely... " haha - OMG it's a huge illness and experience ugh - I can't believe the things I have experienced with this illness.

 

[Hip]

I hear many people on PR suggesting using various drugs and supplements. However, when I attended the IiME research colloquium I am fairly sure there was no consensus amongst the scientists that we have adequate validation for any of these treatments. These were scientists who work on the principle that if a result is to be worth taking seriously it is the responsibility of the person claiming the result to publish the evidence in a form that can be adequately analysed by others. It does not need to be an RCT. It does not even need to be published in a journal. But it has to be made available in a form that others can assess critically. My understanding is that for the drug treatments often suggested either that has not been done, or, as for valcyte, it has and the result has been unconvincing.

This is not likely to conform to the standard of evidence and scrutiny required, but there have been polls on this forum which have tried to assess the efficacy of well-known treatments such as low-dose naltrexone (LDN), vitamin B12 and the methylation protocol.

The polls are these:

LDN - how's it working for you? — in this poll, the questionnaire is not particularly well worded, but the results show that out of the 85 people who voted, 34 people (40%) found LDN to be beneficial for their ME/CFS.

Rich Vank's Simplified Methylation Protocol Poll — in this poll, out of the 78 people who answered the questionnaire, 1 person obtained remission from ME/CFS using the methylation protocol, 20 people (26%) obtained a major improvement, 22 people (28%) had a minor improvement, and the rest either had no change in symptoms or were unable to continue.

Poll: Freddd's B-12 Treatment Plan —in this poll, out of the 74 people who answered the questionnaire, 5 people said they obtained remission from ME/CFS using the vitamin B12 protocol, 20 people (27%) had a major improvement, 15 people (20%) obtained a moderate improvement, 9 people (12%) had a minor improvement, and the rest had either no change, were made worse, or were unable to continue.

I know these polls are very informal, and there is no rigorous definition of what is meant by a "major improvement" or a "minor improvement"; nevertheless they do provide a very useful indication.


Although most people on this forum are resourceful and capable of trying these ME/CFS treatment protocols themselves, I wonder just how many less capable ME/CFS patients there are "in the shadows" who have not tried or even heard of these treatments. People on these forums tend to be self-starter types, smart and motivated enough do things for themselves; but these forums are no doubt just the tip of the iceberg of ME/CFS patients.

For non-self-starter types, it may be that the only way they get to try these potentially beneficial treatments is if their doctor proposes them. This is why it would be good to have such treatments in the NICE guidelines, if some small scales studies could be set up to validate them. And it would be good to see the NHS begin to get involved in the process of validating the ME/CFS treatments most commonly used and rated by patients, and commonly prescribed by the leading ME/CFS specialists.

 

[Hip]

In terms of a good overview of the various treatments used by ME/CFS doctors, these pdf documents are useful:

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Diagnosis and Management: The Basics and Beyond
Dr Daniel Peterson MD

ME/CFS Treatment Resource Guide for Practitioners
Dr A. Martin Lerner