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

[Persimmon]

@ Jonathan Edwards, let me join the quorum of those delighted and enthused by your PR participation.

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.

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.

What about Ampligen?

At the most recent FDA investigation into whether to approve Ampligen for "CFS" patients, the FDA's expert panel voted that this treatment was safe, but that it had not been shown to be effective.

The public discussion by those panel members (prior to their voting) conveyed the sense that most of them accepted the evidence presented that Ampligen was highly effective for a small minority of CFS patients, but that as they couldn't explain which subset would benefit they were reluctant to give it blanket approve for all CFS patients. They were also concerned that there was no objective means of measuring therapeutic response in CFS.

From memory, I think there have been two RCTs into Ampligen for CFS, although they weren't what you'd call exemplary trials.

Reputable ME researchers who were involved in the clinical component of those trials gave evidence that, in select cases, the treatment effect was dramatic.

This FDA process seemed locked into an impossible paradigm - CFS might encompass multiple illnesses, but we cannot be sure without having differentiating biomarkers; and we cannot adopt any biomarker unless it is universally exhibited by every CFS patient. (Sigh!)

So, Dr Edwards, might Ampligen fall into the twin category of (1) being worth following up in trying to identify biomarkers; and (2) being a drug worth trying on ME patients in the same way those 6 drugs used to be used therapeutically on a suck-it-and-see basis in RA?

(Unfortunately, Ampligen is not yet approved for any illness, and so it cannot readily be used off-label.)

 

[Leopardtail]

Sorry to hear that you've had a disruptive time, but it could be that there really was good reason for banning them though. Do you know if the testing they were using did have good evidence of reliability and specificity? There has been trouble with dodgy tests being used in this area, and it's not just with psychiatry that there's a problem with people making unfounded claims to patients. Hope things pick up for you regardless.

Myhill had to hire a barrister to stop serial harassment by the GMC. For which reason I do not trust their motivations - the GMC panel judging her did not have a single person with peer knowledge of ME - a requirement of the panel.

 

[Leopardtail]

I think that there are plans to start using the vast pool of clinical data represented by medical records for research, but there are obstacles.

• How to anonymise it
• How it will be used
• Who will own/use it.
• Poorly-kept and missing records
• Poor quality of data due to confounding factors, diagnostic errors, etc.

But it might still be possible to get some clues from mining such records.

One of my main concerns is that the current government seems keen to hand the whole thing over to private companies, which may turn out to be 'the usual suspects': ATOS, G4S, Serco, Capita, drug companies...but then the public sector has shrunk to such a degree, and funding is continuing to shrink - who else will do it?

the idea of having all my personal data ending up in india and solid to insurance companies does not fill me with confidence. The private sector is not trustworthy with vast volumes of such data.

 

[Leopardtail]

@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.

they have immense difficulty getting funding, and even more difficulty getting published.

 

[justy]

I think something we are missing here, in terms of treatment is that within the NHS there is no ability to individualise. As we do not know 'what M.E is' or 'what causes M.E' we are hung up on finding 'a cure' 'a treatment', which is not forthcoming for various reasons.

What we know we do have, from the work of M.E/CFS specialists all over the world are many tests and treatments which can individually, based on their tests, help many patients. For example many patients also have POTs or some other type of autonomic dysfunction, which can be at least partially treatable, with some reportin g improvements when this is treated.

We also know that individualised testing can throw up chronic viral infections, which when treated with antivirals may help some patients. We also hear of patients being tested for bacterial infections, such as Lyme or Chlamydia's or mycoplasma's, who have some or complete relief of symptoms from antibiotic treatments.

We know that some specialists test for immune dysfunction and use immune modulators or IVIG and that some find a reduction in symptoms from this kind of treatment.

There are patients on this forum who have had these experiences of being tested for what is testable and treated for what is treatable. This approach works to help patients. Yet within the NHS we cannot be tested for these things or offered these treatments, which already exist, and help many to improve their functioning.

Why is that? why can we not have individualised medicine? why do NICE insist that further testing SHOULD NOT be done on M.E/CFS patients. The misdiagnosis rate is so high (did they find at Newcastle 40% ?) that we should all be thoroughly tested and anything found treated.

Just testing for POTS etc is not difficult, and yet I will never know if I have this as a co morbid condition or of I could be treating it as I will not be offered testing for it within the NHS.

From my own personal experience I can report that I have had years and years of serious lung problems - pneumonia 3 times since a child - twice in the past 6 years as well as various other issues with Asthma and bronchial infections. I have seen a specialist. But because of my M.E diagnosis they went so far as to suggest that I hadn't even had pneumonia, that the antibiotics I had been taking where working as a placebo! - I have scarring on my lungs visible on a CT scan and pleural tags. I am very susceptible to infection because of this.

Since paying for testing (abroad) I now know I have chronic chlamydia pneumonia - well documented in the literature as a cause of pneumonia and as having a part to play in COPD and adult asthma.

I recently had a severe exacerbation of asthma and had to take prednisolone high dose and was very very ill. My M.E doctor knew what I needed to be treated with, because of the Cpn result and when I got that specific treatment I improved, whereas nothing my GP did was working.

My consultant now has the proof he needed that I have had pneumonia in the past (at least once) but why did he not test for it here years ago? I may not have ended up with the scarring that I now have and the lifelong tendency to distressing lung infections.

This is such a simple test, and the treatment is also not too complex. Chronic Cpn infections are well known by the medical profession - it is not an area of disagreement- why are patients being let down In this way?

 

[MeSci]

Just testing for POTS etc is not difficult, and yet I will never know if I have this as a co morbid condition or of I could be treating it as I will not be offered testing for it within the NHS.

I don't want to take this thread off-track, but just wondered whether you had tried the 'Poor Man's Tilt-Table Test' (PMTT) which you can do yourself but with someone else present. There are several threads on this such as this one.

(It's not something I am any kind of authority on - just remembered reading about it.)

 

[justy]

I don't want to take this thread off-track, but just wondered whether you had tried the 'Poor Man's Tilt-Table Test' (PMTT) which you can do yourself but with someone else present. There are several threads on this such as this one.

(It's not something I am any kind of authority on - just remembered reading about it.)

Thank you MeSci for the suggestion. My point is that PWME should be tested for this common co morbid condition under the NHS. We all here end up being our own doctors as much as possible - but that is not a good state of affairs.

 

[Jonathan Edwards]

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.

I am all in favour of encouraging the NHS or university departments of medicine (research is strictly the remit of these rather than NHS although lines are blurred) to try treatments but to be honest there has to be something reasonably tangible in terms of formally reported evidence and I am not getting the impression that it is out there. It is the responsibility of those proposing and using the treatments to report their findings in an evaluable form and preferably in the form of convincing trials. I am listening hard to what people are saying but I cannot see myself persuading my NHS colleagues to take things on with what I hear so far. Reliable science requires a lot of hard work - of the sort that I get the impression has not been done here. I will keep listening but I think more powerful ammunition is needed.

 

[Jonathan Edwards]

Just to add in reply to Justy, I agree that the NHS is failing to manage all sorts of problem in time and effectively. As I said, that is why I resigned. But a failure to diagnose a lung infection, if that has happened, is I think a separate issue to the issue of management of ME specifically. It is symptomatic of the general underresourcing and negative motivating factors in the system. Some of it is a regional problem - autonomic dysfunction is studied in association with chronic fatigue at least in London and Newcastle but I guess probably not elsewhere. That in part reflects the recent policy of having no central policy for service provision in the NHS - unlike in the days when there was a Central Public Health Laboratory Service (where my mother worked).

But as I say, I will keep listening because I am gradually getting an idea of what is needed to turn things around and every little clue can be useful.

 

[Leopardtail]

I think something we are missing here, in terms of treatment is that within the NHS there is no ability to individualise. As we do not know 'what M.E is' or 'what causes M.E' we are hung up on finding 'a cure' 'a treatment', which is not forthcoming for various reasons.

What we know we do have, from the work of M.E/CFS specialists all over the world are many tests and treatments which can individually, based on their tests, help many patients. For example many patients also have POTs or some other type of autonomic dysfunction, which can be at least partially treatable, with some reportin g improvements when this is treated.

We also know that individualised testing can throw up chronic viral infections, which when treated with antivirals may help some patients. We also hear of patients being tested for bacterial infections, such as Lyme or Chlamydia's or mycoplasma's, who have some or complete relief of symptoms from antibiotic treatments.

We know that some specialists test for immune dysfunction and use immune modulators or IVIG and that some find a reduction in symptoms from this kind of treatment.

There are patients on this forum who have had these experiences of being tested for what is testable and treated for what is treatable. This approach works to help patients. Yet within the NHS we cannot be tested for these things or offered these treatments, which already exist, and help many to improve their functioning.

Why is that? why can we not have individualised medicine? why do NICE insist that further testing SHOULD NOT be done on M.E/CFS patients. The misdiagnosis rate is so high (did they find at Newcastle 40% ?) that we should all be thoroughly tested and anything found treated.

Just testing for POTS etc is not difficult, and yet I will never know if I have this as a co morbid condition or of I could be treating it as I will not be offered testing for it within the NHS.

From my own personal experience I can report that I have had years and years of serious lung problems - pneumonia 3 times since a child - twice in the past 6 years as well as various other issues with Asthma and bronchial infections. I have seen a specialist. But because of my M.E diagnosis they went so far as to suggest that I hadn't even had pneumonia, that the antibiotics I had been taking where working as a placebo! - I have scarring on my lungs visible on a CT scan and pleural tags. I am very susceptible to infection because of this.

Since paying for testing (abroad) I now know I have chronic chlamydia pneumonia - well documented in the literature as a cause of pneumonia and as having a part to play in COPD and adult asthma.

I recently had a severe exacerbation of asthma and had to take prednisolone high dose and was very very ill. My M.E doctor knew what I needed to be treated with, because of the Cpn result and when I got that specific treatment I improved, whereas nothing my GP did was working.

My consultant now has the proof he needed that I have had pneumonia in the past (at least once) but why did he not test for it here years ago? I may not have ended up with the scarring that I now have and the lifelong tendency to distressing lung infections.

This is such a simple test, and the treatment is also not too complex. Chronic Cpn infections are well known by the medical profession - it is not an area of disagreement- why are patients being let down In this way?

I could not agree more. I was able within two months from a standing start to identify probable causes of my issues despite severe ME and awful concentration. My GP found it too easy to write me off as depressed and hand out anti-depressants. The failure to do the basics when they did not work wasted vast amounts of their time. A decent doctor took 10 minutes to conclude they were wrong. Another decent doctor too about 30 minutes to identify part of the issue but did too simplistic a thyroid test.

They can and must do better.

 

[Mark]

I was recently diagnosed with sleep apnea having had it for 20 years, and having seen loads of doctors, and that only happened because I pushed for the testing myself (thanks to contacts from PR suggesting it). It affects 5% of the population. I had been complaining of unrefreshing sleep for 20 years. Clearly that is just not good enough.

Even though the average GP's salary is about 3 times what mine would be if I could work full-time, they can't be expected to know everything and diagnose perfectly, and clearly they don't. So in the case of people who have a chronic illness, and where the GP is stumped for a diagnosis, after 5 years of confusion, or 10 years, or whatever, surely something should kick in and you get referred to a centre of excellence in diagnosing hard-to-diagnose conditions? Even a fairly low hit rate from such a centre could potentially save enormous amounts of money in wasted NHS expenditure and lost productivity. Actually, for much of the first decade of illness I naively assumed that surely something like that must pop up at some point...but of course it never did...

 

[Mark]

What about Ampligen?

At the most recent FDA investigation into whether to approve Ampligen for "CFS" patients, the FDA's expert panel voted that this treatment was safe, but that it had not been shown to be effective.

The public discussion by those panel members (prior to their voting) conveyed the sense that most of them accepted the evidence presented that Ampligen was highly effective for a small minority of CFS patients, but that as they couldn't explain which subset would benefit they were reluctant to give it blanket approve for all CFS patients. They were also concerned that there was no objective means of measuring therapeutic response in CFS.

From memory, I think there have been two RCTs into Ampligen for CFS, although they weren't what you'd call exemplary trials.

Reputable ME researchers who were involved in the clinical component of those trials gave evidence that, in select cases, the treatment effect was dramatic.

This FDA process seemed locked into an impossible paradigm - CFS might encompass multiple illnesses, but we cannot be sure without having differentiating biomarkers; and we cannot adopt any biomarker unless it is universally exhibited by every CFS patient. (Sigh!)

So, Dr Edwards, might Ampligen fall into the twin category of (1) being worth following up in trying to identify biomarkers; and (2) being a drug worth trying on ME patients in the same way those 6 drugs used to be used therapeutically on a suck-it-and-see basis in RA?

(Unfortunately, Ampligen is not yet approved for any illness, and so it cannot readily be used off-label.)

The problem with Ampligen seems to be that state authorities are (rightly) legally barred by Congress from conducting any research into it because it's owned by a private company - that would be like handing money over to a private individual or business. Since the company owns the intellectual property, it has to be the one to develop the evidence, but the way it's been doing that has not so far been acceptable to the FDA. Ampligen needs a successful stage 3 trial which is hugely expensive. In the context of these recent conversations here, though, it makes me wonder who else (other then US health authorities) might be free to pay for such a trial, small or large...I think it's very expensive though and nearly all the money raised would ultimately go to the company that developed it, and they would get that money whether the trial was successful or not...

 

[Leopardtail]

Just to add in reply to Justy, I agree that the NHS is failing to manage all sorts of problem in time and effectively. As I said, that is why I resigned. But a failure to diagnose a lung infection, if that has happened, is I think a separate issue to the issue of management of ME specifically. It is symptomatic of the general underresourcing and negative motivating factors in the system. Some of it is a regional problem - autonomic dysfunction is studied in association with chronic fatigue at least in London and Newcastle but I guess probably not elsewhere. That in part reflects the recent policy of having no central policy for service provision in the NHS - unlike in the days when there was a Central Public Health Laboratory Service (where my mother worked).

But as I say, I will keep listening because I am gradually getting an idea of what is needed to turn things around and every little clue can be useful.

The core problem here is that GPs are actively encouraged to ignore the symptoms of ME patients and get the patients to do the same (try searching U-tube for Trudie Chalder's video). Thus ME patients do have a real issue with medical neglects.

GPs need to continue to try to identify symptom groups that might indicate testing required or sensible referrals.

 

[Valentijn]

But a failure to diagnose a lung infection, if that has happened, is I think a separate issue to the issue of management of ME specifically.

Not necessarily. Medical treatment is routinely withheld because of the ME/CFS label. This is bad enough for patients with "just" ME, but can get very awkward for the patients who have the bad taste to come down with an additional illness.

Many doctors believe that ME/CFS is a psychosomatic disorder - they are heavily lobbied by certain psychiatric groups and likely insurance interests as well. NHS and NICE implicitly support the psychosomatic model by endorsing purely psychological treatments and discouraging most biomedical interventions. They firmly believe that medical investigations is both pointless and harmful.

The similar situation in the Netherlands has lead to one woman recently dying of breast cancer. Her GP refused to investigate her for breast cancer, despite having the obvious symptoms, unless she stopped seeing her ME specialist. He believed all of her symptoms were caused by treatment, not by illnesses, and by the time a nurse reached the obvious conclusion and got the woman the proper testing to detect breast cancer, it was much too late.

That was an exceptional situation, and not in the UK system, yet we routinely hear stories here about patients facing consistent obstruction from the NHS in getting any investigations.

 

[justy]

@Leopardtail @Mark and @Valentijn have it exactly right in their posts above. My issue with a chronic Cpn infection is not separate from my M.E because GP's are confused by the plethora of symtpoms and consultants only look in their narrow speciality.

My pulmonary specialist was very helpful and nice to me before my M.E diagnosis, but when I saw him 3 years after the diagnosis he was unpleasant to the point of being abusive (I have a post about it somewhere) and has now decided (despite the lung condition pre dating my M.E by over 20 years, despite CT and X ray evidence) that he wants nothing more to do with me. He has advised my GP not to give me any more antibitoics if I 'think' I have an infection (I must take them the minute I feel increased inflammation, otherwise I can end up with months of wheezing and coughing and sitting up at night to sleep).

He actually went as far to ask why I 'believed' I was having respiratory infections.

This may seem to be going off topic, but it is very important that M.E be wrested back from the biopsychosocial clique and given the respect it deserves as a serious disease. My lung infections perhaps are not in the end separate from the general immune dysfunction that my private specialist has found, which has obviously, over the years made me susceptible to infections of all kinds - this is common in a subset of M.E patients. I also have widespread inflammation shown on testing, which again is affecting my hwole body, including excacerbating lung inflammation.

Yet despite the presence of obvious lung issues, and a malar rash and now ANA positive no one has ever considered Lupus as a cause -despite my requests (ANF negative for the past few years, and yet ANA negative Lupus exists). I am still, two years after request waiting to see a rheumatologist. I know that my M.E diagnosis will go with me to the appointment and that I have no hope of an even handed discussion about my symptoms. I saw a physio who triages for the rheumy and told her my symptoms, specifically making a point of mentioning the ones that overlap with Lupus to see what she would say (joint pain, sunlight sensitivity, lung issues, fatigue, eye problems etc) and she read my notes and then said - yes it sounds like chronic fatigue syndrome to me!!!??) It was only because I convinced her that a couple of my tests were abnormal and pointed out that there cant be abnormal tests at all to get a diagnosis of CFS that she agreed to keep me in the system to see the rheumy)

Nice guidelines encourage GP's to STOP testing to rule out other conditions. I agree with the poster that believed at some point a referral to a specialist clinic which diagnosed difficult to deal with or rare conditions would be forthcoming - after all the Newcastle Clinic, under Julia newton finds a 40% misdiagnosis rate (does someone have the link to that paper - have I got the figure right?).

In answer to the original question, I think perhaps patients in England may have a case to argue for referral to Newcastle for example in order to be properly investigated for conditions such as POTS or sleep disorders, but I live in Wales, where there is NO specialist provision (apart from a physiotherapy led clinic on Anglesey - further from me than London). The rules do not allow me to ask for referral outside of Wales, as far as I can tell.

 

[Jonathan Edwards]

Don't get me wrong, I agree that there are major problems here. But I think there may be three separate issues.

One is that we should no longer have general practitioners. Many countries never have. The GP was a useful element of the NHS in 1948, when there was nothing much except surgery, penicillin and aspirin. Now all medical conditions deserve expert management so I cannot see any justification in there being generalists of this sort. We also should not have one half of the service selling services to the other half with incentives to save money by not buying these. This is a general structural problem with the NHS that is affecting people with all illnesses. Inadequate care occurs across the board.

The second problem is the believe that there is a psychosomatic illness called CFS - and I agree this is deep rooted and a major source of mismanagement.

But the third issue is whether the NHS should be providing treatments for ME recommended by private practitioners but not adequately validated. And I think on current evidence not. The evidence has to be better. People have mentioned some of the difficulties here with commercial interests in the US but there is no ban on researching commercial products in the UK and maybe it should be done.

 

[justy]

I agree the GP system should be overhauled. To train some of the brightest people in the country for years, just to have them sit in a room all day and deal with colds and verruca's seems a waste of resources.

I suggest a GP service where there is a triage nurse to assess the patient as they go in (like A and E), then the majority of cases could be dealt with by specialist nurses, with healthcare assistants to take blood etc and a smaller amount of GP's to deal with the more complicated cases - this way the GP would have far more time for investigating his patients and listening to their needs.

Then I think the referral onwards to a specialist should also change. If a patient has a complicated illness, then they can spend years going through each speciality before they hit on the right one - and at the moment in Wales the patient must go back to their GP for referral to the next specialist each time. Once in the hospital/consultant system surely the consultant should be able to make a direct referral onwards.

Anyway this hasa not been thoroughly thought through, just a few musings.

 

[justy]

From @Jonathan Edwards

But the third issue is whether the NHS should be providing treatments for ME recommended by private practitioners but not adequately validated. And I think on current evidence not.

I go back to my original point that we are not currently looking for a blanket treatment for 'M.E' prescribed by an M.E specialist for which the evidence does not exist for the use in every patient across the board, but as I said earlier, their is no reason the NHS cannot provide treatments based on validated testing.

I am not sure where the idea that some testing is not validated comes from - yes there may be some, but there is also much that these private specialists do that is mainstream.

For example: I now have a positive ANA - that should be, but will not be investigated by the NHS. They will tell me it is an anomaly, as they did when my ESR was raised.

Another example - my Cpn test was done using the normal methods of testing - it is well documented in the literature as being a valid test and a real diagnosis. Again I will not get treatment from the NHS for this. I had testing - again standard testing which showed a COQ10 deficiency - something the NHS are allowed to prescribe - I was denied it.

Testing - that is validated can be done for POTS, and treatments are available. ME patients cannot get access to this testing and if they go private or abroad are told the tests - which are mainstream- are 'not valid'

Quite honestly we cannot win in the current climate.

For now all I want is to be tested for what is testable and treated for what is treatable.

As this is a thread discussing the NHS I imagine many on here such as @heapsreal and @SOC , who have a lot of experience in this area may not have looked at this lively and interesting discussion - I would be interested to hear their views - although this thread has got rather long now.

 

[Leopardtail]

Don't get me wrong, I agree that there are major problems here. But I think there may be three separate issues.

One is that we should no longer have general practitioners. Many countries never have. The GP was a useful element of the NHS in 1948, when there was nothing much except surgery, penicillin and aspirin. Now all medical conditions deserve expert management so I cannot see any justification in there being generalists of this sort. We also should not have one half of the service selling services to the other half with incentives to save money by not buying these. This is a general structural problem with the NHS that is affecting people with all illnesses. Inadequate care occurs across the board.

The second problem is the believe that there is a psychosomatic illness called CFS - and I agree this is deep rooted and a major source of mismanagement.

But the third issue is whether the NHS should be providing treatments for ME recommended by private practitioners but not adequately validated. And I think on current evidence not. The evidence has to be better. People have mentioned some of the difficulties here with commercial interests in the US but there is no ban on researching commercial products in the UK and maybe it should be done.

I have mixed views on your thoughts. Most patients don't have the technical knowledge to identify the specialist they need to see. Many specialists are TOO specialised and ignorant outside their area. E.g. neither the immunologist treating my ME, nor the endocrinologist treating my diabetes could tell me how the fever mechanism works. I's triggered by and vital to the field of the one, and implemented in the field of the other.
A triage function is needed that identifies where to send the patient. A co-ordination function is also needed to prevent the management of disease A messing up disease B.

The role of GP as 'gatekeeper to tests' and their constant duplication of the work of others however needs to be scaled down. We also need a much higher incidence of dynamic teams in complex diseases so that immunologists, endocrinologists, etc etc are working side by side and discussing single patients from all angles where that patient warrants it - the current practice of letter writing between specialisms leaves the patient as piggy in the middle.

 

[Leopardtail]

Don't get me wrong, I agree that there are major problems here. But I think there may be three separate issues.

One is that we should no longer have general practitioners. Many countries never have. The GP was a useful element of the NHS in 1948, when there was nothing much except surgery, penicillin and aspirin. Now all medical conditions deserve expert management so I cannot see any justification in there being generalists of this sort. We also should not have one half of the service selling services to the other half with incentives to save money by not buying these. This is a general structural problem with the NHS that is affecting people with all illnesses. Inadequate care occurs across the board.

The second problem is the believe that there is a psychosomatic illness called CFS - and I agree this is deep rooted and a major source of mismanagement.

But the third issue is whether the NHS should be providing treatments for ME recommended by private practitioners but not adequately validated. And I think on current evidence not. The evidence has to be better. People have mentioned some of the difficulties here with commercial interests in the US but there is no ban on researching commercial products in the UK and maybe it should be done.

Jonathan,

If you will forgive me giving you a sharp playful 'jab in the ribs' - you seem to have gone into 'defensive doctor mode' . You are answering a criticism other than the one @justy and I raise.

Nobody here wants mediaeval smearing wounds with faeces. What we want is for common causes of symptoms to be investigated, and for proven treatments to be given based upon gathered evidence. This is medicine 101 and its not what we are getting. Secondly where items are relatively safe and show benefit we want cautious experimentation. This is a higher standard than currently applied to depression, its probably a higher standard than applied to the assumption anti-biotics are needed.

ME is a functional diagnosis - it is not a 'disease' as per hashimotos. Common sense needs to prevail it's quite impossible to run large scale empirical trials and get 70% success rates if each groups of patients comprises 15% of the umbrella group. There is a profound lack of intelligence and common sense surrounding medicine in ME. We might as well diagnose people with 'the dreaded lergy'.

poking fun now done.....