ME sufferers ‘appalled’ by proposed therapies
‘The ministry has chosen to ignore the evidence on this neurological disease’
ME Sufferers Malta founder Rebecca Sultana has not enough energy left to continue “fighting our corner”. Photo: Darrin Zammit Lupi
Sufferers of the debilitating illness ME are “appalled” and “horrified” by the health authorities’ decision to consider offering treatment they believe will only make their condition worse.
They feel the Health Ministry’s course of action flies in the face of scientific biomedical evidence that ME – myalgic encephalomyelitis – is a physical, neurological illness as defined by the World Health Organisation in 1969.
Last week the ministry told The Sunday Times it was assessing the possibility of training local professionals to delivercognitive behavioural therapy (CBT) and graded exercise therapy (GET), which focus on treating the illness as a psychological/psychosocial condition.
This sparked outrage among patients who said such statements reflected the lack of proper awareness in the health sector and further accentuated the myth that ME was “all in the head”.
“The most shocking and worrying fact is the ministry has chosen to ignore thesubstantial body of evidence on this organic neurological disease,” Rebecca Sultana,ME Sufferers Malta founder, said,adding she was too ill to continue fighting her cause.
ME is characterised by a range of neurological symptoms, muscle pain and intense physical or mental exhaustion. Its cause is still unknown, there is no known cure, and as there is no exact definition of ME diagnosing, it makes it doubly hard.
As the world today marks the start of ME Awareness Week, Ms Sultana and two other sufferers – Nicola Reiss and actor Kevin Drake – have come forward to voicetheir concerns.
Their fears are supported by researchpsychologist John Greensmith who set up the ME Community Trust in the UK and hasbeen closely following the developmentsin Malta.
“The anecdotal hard-knock experience of patients and research evidence to date shows CBT is ineffective and GET makes the majority worse,” Dr Greensmith, who was diagnosed with ME 24 years ago, told The Sunday Times.
When faced with sufferers’ reservations about the proposed treatment, a ministry spokesman insisted its decisions were based on guidance issued by the UK’s National Institute for Health and Clinical Excellence.
“The ministry already provides services through medical specialists and is considering exploring further therapy,” the spokesman said. He insisted the ministry was willing to reconsider CBT and GET in place of other more effective treatments and assured it was prepared to discuss with ME sufferers about the way forward in terms of therapy.
Dr Greensmith acknowledged that all that was on offer on the UK’s NHS were CBT and GET so it was not surprising that GPs were inclined to refer patients for such therapy.
However, those who tried such therapies failed to improve and research by Twisk and Maes in 2009 established that cognitive behaviour therapy was “ineffective” while graded exercise therapy made the majority “worse”, with sufferers sometimes never recovering to where they started.
So, what is the best treatment?
“The truth is there isn’t an effective one. I hold the view that it is better to have no treatment at all – apart from primary care treatment from your GP for symptom relief, such as medication for sleep, or pain – than one which is ineffective, raises false hopes or makes you worse,” he said.
However, symptoms can be alleviated. Ms Reiss, who was diagnosed with ME in October 2008 when she was living in Malta, wrote in saying she was fortunate enough to find a specialist doctor when she moved to Melbourne who carried out extensive tests and treated underlying conditions.
“I have gone from being largely housebound and unable to work to working 25 hours a week... every ME patient in Malta should have the same access to a trained and knowledgeable doctor,” she said.
Mr Drake went a step further and issued a sincere plea to the authorities: “Please help us restore some of our dignity. That is all. That is everything.”
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John Greensmith
May 8th 2012, 09:18
Cc: Ariadne Massa; Ministry of Health, Medical Council, Malta.
Rebecca Sultana is not the first M.E. (Myalgic Encephalomyelitis) sufferer to declare herself so unwell as to be unable to continue, "fighting our corner" and, I fear, that she may not be the last, unless there are some changes, as I shall propose here. It is disgraceful that it is necessary for anyone, especially so lacking energy, to have to "fight" for what should be given, or assumed, in a decent civilised society which cares for its citizens. It also suggests that there are some opponents, who place something higher - maybe career, or profits - above others' health, which I, as both a sufferer and researcher, find repugnant.
I certainly have been following developments in Malta, which I declare to be the best microcosmic model for a potential breakthrough in better understanding of M.E., from which all else, in particular treatment towards recovery should follow.
I suspect that the Ministry of Health has not , "chosen to ignore the evidence on this neurological disease", so much as it has not been given the opportunity to consider all aspects of it. Successive governments, Worldwide, take cognisance of "The" Science (as though there is only one) and having decided a position, foist it on everyone, having chosen to ignore equally qualified and eminent doctors and researchers, who came to quite different, even polarised, conclusions
It is not surprising because, since 1988, medical establishments determined that Chronic Fatigue Syndrome (CFS) should be the preferred term (Holmes et al. 1988). I have demonstrated, elsewhere, that is logically untenable, scientifically invalid and unreliable and, if pursued, is morally reprehensible. One illness, M.E. cannot, at the same time be each of a whole set of CFS and the whole set itself and a subset one of another ME/CFS or CFS/ME (or all of the above to suit the work you are doing), yet this is what they do.Why did it happen? Well, here's one theory. There were a lot of insurance claims by people with M.E. (a neurological illness according to the World Health Organisation category ICD-10: G93.3). If it could be shown that it was a psychiatric illness (ICD-10: F48.0) they didn't have to pay out. So, the insurance companies, sponsor the research; it is conducted by psychiatrists, who also get paid as consultants to the insurance company (UNUM) and they advise the governments who make policy. Any government funding that there is goes back to the psychiatrists to complete the vicious circle. Primary Health care doctors usually just accept their results without question - after all they are "experts". Anyone who challenges it is, first, ignored; second, derided and ridiculed; third, if they become a thorn in the side, sacked and the subject of a bad press e.g. death threats, never substantiated. Wouldn't you expect, after 25 years, that people would be getting better but it doesn't look like it. Anyone who does get better after CBT or GET may have done so anyway - they probably didn't have M.E. simply because those who do would not be well enough to even travel there to take part.
The notion of "Evidence-based" medicine is arrogance in the extreme, when it is assumed that there is only one possible conclusion to come to. It would be akin to justifying one's own verdict by declaring that it was "Evidenced-based" in law, as though no other conclusion were possible to conceive. [To cite a classic example to illustrate the perils: When Derek Bentley shouted to his associate, Christopher Craig, during an attempted burglary, "Let him have it, Chris!", it could have been interpreted as surrender the gun, or use it to shoot a policeman, on the basis of which a man could go free or to the gallows. Bentley was hanged but later received a posthumous Royal Pardon - after the fatal damage had been done].
One common failing is to attempt to put the cart of treatment before the horse of understanding what it is that you are trying to treat. How can you already have "specialists" in something you don't agree about and be confidently treating patients with controversial treatments, which one says are "helpful" (with no functional evidence, sustained without relapse) and another says "ineffective" and "even harmful" (a view even supported even by those who still advocate and administer them)..
There is controversy, here in the UK, that some clinics are moving from "multi-disciplinary" (how can you be specialist and multi-disciplinary at the same time?) to "Psychiatrist-led". They already are. Every team is led, or dominated, by a Psychiatrist or Clinical Psychologist based in the psychiatric department of a hospital. It would be difficult to know what else they would do if they did not consider it a psychiatric illness.
The NICE guidelines, 2007, are said to be treatment by consensus between doctor and patient and that the patient can decline treatment, without adverse judgement but, in practice, the clinician decides. There is also a difference between what the patient says about it being "helpful" to the Therapist, who gave the treatment and the GP who referred them than what they say, sometimes on the same day, on forums and social networking sites, that it hurt them and set them back.
M.E. sufferers are always delighted to hear of the cure or significant recovery of one of their number, such as reported by Nicola Reiss - whether it is claimed to be by CBT, GET, alternative or radical therapies, supplements, spontaneous recovery, or divine intervention, all of which I have heard - but it is essential, if we are all to benefit, to know that the patient did have M.E., as opposed to some other diagnosis, exactly how it was achieved and that success could not be due to any other possible intervention. I haven't seen this, so far, from anyone independent of making a career move or profit.
It is not the first time that I have heard a spokesperson, on behalf of a medical or political establishment, insist that they are prepared to discuss matters directly with M.E. Sufferers but, usually, sadly, they never seem to get together. This time, however, I sense a sincerity and determination from the Maltese Health Ministry Spokesman, I have not felt before. I would like to propose that our organisation, the M.E. Community Trust.org, broker a World Summit of such an opportunity. The biggest problem, where we came in, is the lack of energy of M.E. sufferers to speak up for themselves but some can and we already have ambassadors from almost every country in Europe, as well as Canada, USA, Australia and New Zealand. What I envisage is a Global Summit, with no country on any continent omitted and neglected as has been the case.
If there is anything adversarial about such talks, it does not need to be accompanied by rudeness or aggression and I cannot think of any country better that Malta, such a lynch-pin during WWII, to mediate with such stoicism and resolution that it deserved and was awarded a medal for it. I hope your Ministry will accept this as an invitation, that we shall gather more ambassadors around the table and that your press will give it the fair coverage for which you have already gained a reputation.
Mary Schweitzer
May 6th 2012, 21:02
There is significant new research from two different American universities showing that patients with CFS (Fukuda 1994 definition) cannot function for two days in a row like a normal person. The researchers used high-functioning CFS patients and matched them with controls. In one study, they were required to undergo a CPET (or VO2 MAX stress) test, which measures the amount of oxygen your body takes in, and the carbon dioxide it dispels, when it reaches peak exercise levels. The first day, both groups scored the same. However, the second day, the CFS group's scores plummeted in half, while the controls not only scored the same, but a few scored better because they had become more used to the mask. The other study shows physiological changes that occur the day after exercise. Both studies are evidence that a program of Graded Exercise could be extremely dangerous for patients who have CFS (Fukuda 1994 definition), not to mention those with M.E., who generally are more sick. So this is not harmless at all - it is quite dangerous.
The research also is part of a growing number of academic papers showing biomedical abnormalities among patients with CFS (Fukuda 1994). Many patients have immune defects such as very low natural killer cell function and the 37kda Rnase-L abnormality, a rare and serious defect in the body's natural antiviral defenses. Viruses associated with this disease include Coxsackie B, Epstein-Barr Virus, all of the beta herpesviruses (cytomegalovirus, HHV-6, and HHV-7), parvovirus, and adenoviruses. Perhaps not all patines have the same thing, but it is incumbent upon the medical profession to make sure that patients who have immune defects and/or viral infections are treated for that. If you look at the research on cognitive behavior therapy and graded exercise, they somehow manage to avoid mentioning all this other research - not a particularly scholarly approach.
The reason that most of this research was done using "CFS (Fukuda 1994)" is that was the most commonly used research definition after the U.S. created the name "chronic fatigue syndrome." There was some research into the causes of Myalgic Encephalomyelitis (M.E.), three areas of which are being borne out by newer research. Coxsackie B was originally considered a suspect for M.E., and now there is evidence (J. Chia, various articles) that it is a major culprit in a number of cases. Physical damage to the basal root ganglia was suspected, and confirmed in the autopsies of a patient who committed suicide years ago, and young Sophia Mirza who died of dehydration in 2005 because the psychiatrists would not believe her when she said she could not swallow (the inquest concluded that she really could not swallow). Finally, Jonathon Kerr of the UK identified several genomes that were related to M.E. and/or CFS; he no longer works in the area, but his results are being used in a number of private research projects in the U.S. involving genomes and systems analysis.
There is simply not room enough to explain how much actually IS known about this (or these) disease(s). The research implying Cognitive Behaviour Therapy and Graded Exercise Therapy somehow "cures" CFS or M.E. has been discredited numerous times, but the proponents use a different definition than anyone else. Their "Oxford definition" excludes physical symptoms and includes psychiatric ones - the direct opposite of the Fukuda definiton, which (while flawed), requires physical symptoms and excludes psychiatric disorders. And yet, even using a data base most likely consisting of patients with depression or anxiety disorders, the PACE studies could not come up with significant results without changing the goal line at the end - they actually re-calibrated it such that scores that would have labeled a patient sick at the beginning of the study relabeled them well at the end. The researchers cite each other over and over again, making it look as if a large body of research exists when in actuality it's only a very small, ideologically oriented set of psychiatrists.
Somebody must be benefiting from recasting a physical disease as a mental one, but it is certainly not the patients.
Malta has had a relatively good track record in respecting the rights of patients with M.E. Patients have good reason to be alarmed at the appearance of the CBT/GET dogmatists, because nothing good has followed them. I hope that it is the patients and their families who are believed.
C Sant
May 7th 2012, 08:23
Actual references to the studies would help evaluate the strength of these assertions. There have been occasions where authors of studies on ME and its pathophysiology were asked to retract their papers as others could not reproduce their results.
The main pillar of science is peer review and reproducibility of results - if one of these are missing, we have to be very careful before accepting the findings as the gospel truth.
Mary Schweitzer
May 7th 2012, 23:30
@ C. Sant - not enough space for a thorough review of the literature, but I suggest you look at the new definition of M.E. by Carruthers et al, published in last August's Journal of Internal Medicine. The authors agreed that the defining characteristic of the disease is NOT fatigue, which it has in common with the disease state generally, but the phenomenon of a post-exertional worsening of symptoms. The bibliography accompanying this article covers a lot of ground and is a good introduction into the wealth of articles on different biomedical aspects of M.E.
Josette Lincourt
May 8th 2012, 07:00
Thanks to Mary Schweitzer for spending energy again trying to explain and set things right. The most important sentence is: "Somebody must be benefiting from recasting a physical disease as a mental one, but it is certainly not the patients."
I should be replying to others as well, but just can't find the energy to do so.
As an ordinary ME sufferer who had to fight an insurance company, a pension board and even a welfare outfit, perhaps all these outfits want ME classified as psychiatric because it is easy to shut people up with antidepressants: if one is not enough to shut one up, they'll easily prescribe two, plus anxyolitics, etc. etc. Once zombified, people can't raise their voices to be heard. It costs little in research to shut people up that way.
I am always amazed to read some people saying something like: "If you don't like how your GP is treating you, just change." I guess few live in Québec (Canada), because here, one out of three persons doesn't even have access to a GP, which means no access to specialists either because one needs a GP's reference.
The economics of disease - and the greed of those who have to pay up when people are ill - are most likely what kills research in most medical domains.
Also, someone wrote of "peer-reviewed" articles in hoity-toity medical journals. Oh yeah! Some of those are not even worth the paper on which they are written or the ink used.
Time for my near coma...
C Head
May 6th 2012, 20:23
Okay,this is just my opinion as someone who has M.E. and also udertook GET & CBT.
I have been ill since Nov 07 and was diagnosed a year ago. I would like to make it clear that my psychological (not organic) problems do exist however they came after my organic symptoms and being repeatedly ' we dont know what is wrong with you '
Once I was diagnosed I had 1 week to deicde whether I wanted to undertake the GET & CBT, In that time I reviewed all possible documentation regarding the therapy. I decided I would give anything the chance that would hold the possibility to make me better.
The documentation provided to me and the disucssions I had with my therapist were rather confussing, in one breath I would be told my illness was neurological and in the next I would be told it was psychological. The therapsist wanted me to go on sick leave from work for around 3 months then a gradual return over 3 months (my hours are 30 hours over 4 days). She explained this would be so I could focus on the therapy, undertsandably my opinion was that this was a false economy to cease my normal activities altogether.
Anyhow I continued the therapy and within a few days it made me worse. The therapist paused my therapy due to the physical effects and asked me to contact my GP imediately. My GP had to triple my dosage to bring my neuropathic pain to a more manageable level. I tried to start the therapy again however the pain again got worse. I returned again to my GP after the therapist wanted to refer me to a pain management specialist (false economy came to mind again). We discussed it at length and decided that I had to discontinue the GET & CBT.
I have been to see the pain management since who advised it was not appropriate for me to undertake any further therapy of this kind. As I do not wish to be on any medication that has a significant opiate effect they can do no further for me.
Yes my illness has got worse since the GET & CBT, but I do not know if this would have happened in any event. The main point is that M.E. needs more investigation and i
Kevin J Drake
May 6th 2012, 19:37
@C Sant
I'd like to make a couple of VERY brief points and call it a day, for today, if that's ok. Being evidently so closely familiar with all the vissicitudes of an M.E. sufferer you will undoubtedly be equally familiar with the fact that most things requiring the least effort and concentration deplete your energies at a rate many times greater than most everyone else.
Good Clinical Practice is relative to many things I suppose. Unless it is constantly updated, however, to keep in step with advances in research and the great leaps and bounds forward being made continuously in the various fields of science and medicine, it risks the possibility of becoming obsolete in certain circumstances. It is not unheard of, certainly, that common (Good) medical practices in days gone by, obviously upheld by contemporary researched evidence available at the time, and naturally thought to be beneficial to patients with particular conditions, were in fact practices then found to be detrimental to the patients due to direct or collateral effects of the treatment. When clear, consensual and peer-reviewed research shows that what was deemed suitable treatment for a condition or symptom is in actual fact ineffective at best, further damaging at worst... or even if there exists just a SUSPICION that a particular form of treatment may cause more harm than good in many instances, it should be discontinued or not recommended, at the very least. After all, isn't the very essence of the Hippocratic oath: 'DO No Harm'?. Other forms of treatment are being administered elsewhere and are achieving far more effective and encouraging results in M.E. patients, focusing on a variety of the co-morbid symptoms displayed by the majority of M.E. sufferers (including, just as an example, tests and treatment for gastro-intestinal intolerances that M.E. patients keep developing and that have a correlation with other symptoms and effects). There ARE other options. CBT and GET are not, emphatically NOT, 'the limit of present knowledge'.
I would also like to clarify that I quoted no 'papers' from the site I mentioned earlier. I simply listed www.hfme.org (the website of the Hummingbirds' Foundation for ME) as a good overview starting point for anyone wanting to know a little more about what Myalgic Encephalomyelitis is all about. The site DOES, however, include a wide array of technical, scientific, well-researched and peer-reviewed papers and reports whose integrity speaks for itself. One of the great things about the internet is that you can find literally ANYTHING you seek. That can work the other way too, in that it is convenient for some to pick and choose materials out of any context or contemporary relevance so as to back up a flawed argument. On the plus side it allows us - especially those who are burdened with a condition that few others, if any, know much about or are interested in knowing about - with the tools to conduct the necessary and relevant research regarding a disease that has taken over and altered our lives COMPLETELY. Because too many times does one get the feeling that 'If I don't learn more about this, nobody else will, apparently'. Thankfully I'm over-generalizing. But not by much. Just as a last note on what's available 'out there'... Starting off with a quick search on the International Consensus Criteria for M.E. is another good starting point. Everything else, proven, peer-reviewed, researched, tried and tested is there on the World-Wide-Web too, whether one has access privileges or not.
As for my allegedly misquoting you in repeating your assertion that information on research is poor, I honestly can't see how anyone can misinterpret, and I quote, "unfortunately sometimes (like in this case) the collected information is still very poor).". But that's not really imortant, I suppose.
I have to agree with you, of course, in that more needs to be done where M.E. is concerned, even and especially at local level. Officially recognizing the disease as the debilitating illness it unequivocally is, is a good start. That and having justified access to the dedicated support structures that the state offers those suffering from chronic and/or debilitating and degenerative conditions. Updating the health sector accordingly through exposure to contemporary research, findings and treatment regimens is also a good move, be it by specialized conferences, seminars.... the options are endless as long as the willingness is there. And perhaps, why not?, see to it that anyone wishing to specialize in the treatment of M.E. may have the right encouragement, the opportunity and resources to do so.
as for @J.Debono.... Seriously? I will not stoop so low as to grace that gratuitous piece of fantasy-schadenfreude (look it up, it's some people's preferred passtime, evidently) with any acknowledgement or comment of my own. However - and this is proof that you can eke humour of of ANY situation, even the most enraging and shameful - I am tempted to counter the gentleman's textbook-case example of perfectly-flawed rhetoric with a similar pseudo-medical anecdote: A possible side-effect of medication required to treat a particular illness - let's just say it's treatment for a heart-related illness, for argument's sake - has the unpleasant collateral of your not being able to go to the bathroom for an unusually extended period of time. So you're prescribed LAXA-GO (super strong), along with the other heart-meds, to help the bowels along. A few months later you're off your meds and in the clear but find yourself all bunged up again, constipated like it was anyone's business. You reach for the Laxa-Go (Industrial-strength) once again, of course. But using the gentlemen's same associative rationale, therefore, requiring the laxative means that your cardiac crisis has returned!!! No. It DOESN'T follow, does it? You're NOT having a heart attack. You're just full of faeces. Simples.
Good night all. If nothing else, it's been interesting. Hopefully interesting enough to elicit others to look up some facts and become more aware.
J. Debono
May 6th 2012, 15:39
"They feel the Health Ministry’s course of action flies in the face of scientific biomedical evidence that ME – myalgic encephalomyelitis – is a physical, neurological illness as defined by the World Health Organisation in 1969."
This is the definition of 1969!!!
Since then ME sufferers have shown to have also psychological problem.
It may even be that ME is a psychosomatic disorder.
Why are ME sufferers refusing this possibility?
One treatment that does improve symptoms are tricyclic anti-depressant - therefore there you go.
Beatrice Gatt
May 6th 2012, 17:08
Mr Debono, the WHO ICD listing referred to dates back to 1969 because it has been THAT long since this illness was defined as a neurological (and not psychological) condition!! If you would like to reference more recent data, I suggest you start by looking at my link below to the International Consensus Criteria of 2011.
There are several biological markers which repeatedly show up in ME patients. Just because these are often not tested in Malta, it doesn't mean they don't exist. I suggest you go back to the literature and inform yourself. Anti-depressant drugs are simply NOT the solution.
Josette Lincourt
May 8th 2012, 07:22
Oh boy... K J Drake is right about your schadenfreude fantasy!
Beatrice Gatt
May 6th 2012, 14:36
In any discussion about ME, it is important clarify exactly what we are talking about. As per the International Consensus Criteria, "Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features." See http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
Much like Ms Reiss has stated above, I have been fortunate enough to be seen by an ME specialist abroad, who after extensive testing has treated my underlying conditions. Yet I strongly feel that every ME patient in Malta should have the same access to a trained and knowledgeable doctor. Access to appropriate medical treatment is a fundamental human right.
The authorities have ignored ME patients for far too long. I strongly believe that there are relatively simple, cost effective remedies that can be put in place to alleviate the suffering of these patients. While not offering a complete cure, they can offer a better quality of life and restore a modicum of dignity.
Francis Saliba M.D.
May 6th 2012, 10:20
Why "appalled and horrifed"? The treatment is only ON OFFER (not compulsory) for a disease for which "there is as yet no effective treatment".
Kevin J Drake
May 6th 2012, 11:32
Dr. Saliba, M.E. Sufferers, the world over, are generally appalled and horrified with ANY measures taken or proposed by their respective health care sectors, when more recent and undisputed specialist medical consensus proves that these very limited measures proposed or 'ON OFFER' (take it or leave it, perhaps?) are, in actual fact, INEFFECTIVE at the very best, though more often than not making things WORSE, as a rule. The most cursory glance at updated and eminently reputable papers on the subject bear ample evidence to this. There is as yet no effective treatment for M.E. holistically. However, for a disease that has sixty four recorded symptoms, there have been a number of advances made in the way that tests and diagnoses are carried out, and treatment for a number of these symptoms that is more effective and produces better results than the equally limited treatment and medication used in the past and, depending on where you are, the present. These tests and treatment options ARE available elsewhere and, in varying ways, through the public health sector. Ultimately, I suppose, a lot depends on how adjourned and updated, or willing to adapt to contemporary reality, a health sector is.
Joseph A Borg
May 6th 2012, 12:03
quoting from the same article you're reading:
>> GPs were inclined to refer patients for such therapy
>> apart from primary care treatment from your GP for symptom relief, such as medication for sleep, or pain – than one which is ineffective, raises false hopes or makes you worse,
a clueless patient would go by the advice provided by the GP who in turn is taking the recommendations from the health service.
Veronica Jones
May 6th 2012, 12:16
ME sufferers are 'appalled and horrified'
1. because of the harm graded exercise can do as not all ME sufferers are aware of this. Many ME sufferers are severely affected now as a result of pushing themselves to try graded exercise because desperate people will try anything to get better especially when 'offered' to them by medics as the only 'treatment'.
2. because the money on setting up this training to give 'treatments' which are either ineffective or actually harmful would be better spent on research.
C Sant
May 6th 2012, 12:46
@ Joseph Borg
Be careful, this information is just the personal opinion of Dr Greensmith - there is no quote to scientific studies about the attitude of GP's or otherwise (I could neither find any scientific articles authored by Dr Greensmith).
Most of the GP's keep up to date with the literature, so they know what is the standard treatment and how effective this is. It is the GP (and the specialist) responsibility to discuss all the relevant issues with the patient and then together find an agreeable plan of treatment.
If the GP or the specialist does not have the necessary time, then my advice is to change him/her - today their is the choice and the opportunity, but do not degrade treatment that has been found to be useful for at least a sub category of ME patients.
Francis Saliba M.D.
May 6th 2012, 17:25
Anyone who is "appalled and terrified" should give the treatment a wide berth. Those who suffer from, so far, incurable diseases should not be deprived of state assistance in procuring medicines still in the experimental stage as long as the exchequer can afford it. That is happening all the time with cancer treatment. It is a helpful psychological boost that everything possible is being done.
Josette Lincourt
May 8th 2012, 07:14
To C Sant - Dr Greensmith's opinion about the attitude of GPs probably comes from all the work he has done and still does although himself a ME sufferer and the experiences of many who have expressed how they have been treated. Here in Québec, of the people I know who are getting better care, it is mostly people whose elderly GP has retired or died and who somehow managed to get a foot into a clinic (or some now PAY to be part of a so-called "co-op clinic" - the legality of which is sometimes questioned by our medicare system) where there are mostly young doctors who DO take the trouble to read the literature. I am thankful that there are people like Dr Greensmith who express what most commonly happens to people with ME.
C Sant
May 6th 2012, 10:04
Though I sympathise with ME sufferers or as it is often called chronic fatigue syndrome (CF), we need to base our protocols on what is known and tested though unfortunately sometimes (like in this case) the collected information is still very poor).
The following is taken from a paper on Spa treatment (Guidelli et al, 2012: Fibromyalgia Syndrome and Spa Therapy: Myth or Reality? ; Clin Med Insights Arthritis Musculoskelet Disord. 2012; 5: 19–26, Clin Med Insights Arthritis Musculoskelet Disord. 2012; 5: 19–26.)
“Because of unknown etiology and unclear pathogenesis, there are no standard therapy regime for FS. In recent years, at least three sets of guidelines have been developed by different medical organizations in an attempt to standardize the treatment of this condition (American Pain Society, European League Against Rheumatism, Association of the Medical Society of Germany). Optimal management of FS includes a multidisciplinary approach with a combination of non-pharmacological and pharmacological treatment modalities tailored according to pain intensity, function, and associated features such as depression, fatigue, and sleep disturbance, decided through discussion with the patient. A variety of medical treatments, including antidepressants (ie, amitriptyline, duloxetine, fluoxetine, and moclobemide), analgesics (ie, paracetamol and weak opioids like tramadol), non-steroidal anti-inflammatory drugs (NSAIDs), sedatives, muscle relaxants, and antiepileptics have been used to treat FS. Given the complexity and chronicity of FS and the relatively poor response to pharmacological treatments, it is not surprising that patients often resort to complementary or alternative therapies. Non-pharmaceutical treatment modalities, including exercise, physical therapy, massage, acupuncture, homeopathy, dietary, osteopathic manipulation, patient education, cognitive behavioural therapy and spa therapy were proposed from various authors. There is strong evidence that cognitive behavioural therapy (CBT) and exercises are effective in FS.”
In addition, looking at the US, British and German recommendations, it is clear that while there are some lines of treatment, these do not work on everyone (this shows that we are not referring to a single disease but a spectrum).
The US recommendations (http://jama.ama-assn.org/content/292/19/2388.full.pdf+html) are divided into 3 steps:
Step 1
Confirm the diagnosis.
Explain the condition.
Evaluate and treat comorbid illness, such as mood disturbances and primary sleep disturbances.
Step 2
Trial with low-dose tricyclic antidepressant or cyclobenzaprine.
Begin cardiovascular fitness exercise program.
Refer for cognitive behaviour therapy or combine that with exercise.
Step 3
Specialty referral (eg, rheumatologist, physiatrist, psychiatrist, pain management).
Trials with selective serotonin reuptake inhibitor, serotonin and norepinephrine reuptake inhibitor, or tramadol.
Consider combination medicationtrial or anticonvulsant.
Traditionally more conservative, the British recommendations are full of conditionals, but basically follow the same lines of treatment as the US:
Heated pool treatment with or without exercise is effective in fibromyalgia
Individually tailored exercise programmes, including aerobic exercise and strength training can be beneficial to some patients with fibromyalgia.
Cognitive behavioural therapy may be of benefit to some patients with fibromyalgia.
Other therapies such as relaxation, rehabilitation, physiotherapy and psychological support may be used depending on the needs of the individual patient.
Tramadol is recommended for the management of pain in fibromyalgia
Antidepressants: amitriptyline, fluoxetine, duloxetine, milnacipran, moclobemide and pirlindole, reduce pain and often improve function therefore they should be considered for the treatment of fibromyalgia
Tropisetron, pramipexole and pregabalin reduce pain and should be considered for the treatment of fibromyalgia
Actually all this proves one thing – we need further studies and well controlled clinical trials to identify better treatment options for this group, as contrary to the perception of many, ME really exists and is much wider than what one might think.
Kevin J Drake
May 6th 2012, 11:09
Mr. Sant, with all due respect, copying and pasting an online paper in isolation of all else does not constitute a specialist opinion. On the contrary, it goes a long way in re-enforcing disproved and discriminatory positions and a continued befuddlement in people's minds. MISINFORMATION, whatever form it may take, is the greatest disservice one can render to the already precarious situation of most M.E. sufferers. A little knowledge is, indeed, a very dangerous thing. I also wish to inform you that the collected information is not, as you implied, still very poor. In recent years much has been done in the way of research into M.E. and a simple search on the internet will give anyone honestly willing to know more about this disease a veritable goldmine of WELL-RESEARCHED, UNDISPUTED, PROVEN AND SPECIALIST-CONSENSUAL INFORMATION. www.hfme.org is a good start.
Beatrice Gatt
May 6th 2012, 14:03
Mr Sant, your response clearly shows that you are not distinguishing between Fibromyalgia Syndrome (FS) and Myalgic Encephalomyelitis (ME). While the two are often co-morbid, they are two different conditions. You state "Heated pool treatment with or without exercise is effective in Fibromyalgia" but this is NOT the case for ME. As has been clearly stated, any graded exercise therapy for ME patients is not recommended and can have very dire consequences. I suggest you go back to your reading and perhaps quote some documents for us which refer to ME specifically.
C Sant
May 6th 2012, 14:49
@Kevin Drake
The last thing that I wanted is to re-enforce "disproved and discriminatory positions and a continued befuddlement in people's mind" I have a lot of respect and have direct knowledge (one of my very close relatives suffers of ME) of such a condition, I can also understand the frustration (not to mention the anxiety and depression) that can accompany the condition when the treatment does not work.
While I presented an abstract from not just an online paper, but a peer-reviewed scientific paper that is freely available on line (there are others but while I have the full access, only the abstract is publicly available) as well as the accepted treatment protocol for the US and the UK (usually reached by consensus), the papers you quoted in www.hfme.org have not been peer reviewed and only listed on a website of foundation representing patients.
Health Departments and Clinicians can only follow what is considered to be Good Clinical Practice, otherwise they are liable for damages if not manslaughter as well as practice. At the moment the GCP protocols are those listed and that is the limit of the present knowledge.
Please do not put words in my mouth, I did not imply that the information or the research on ME is poor, what I said that more is required -something that I am sure all ME sufferers and clinicians agree.
C Sant
May 6th 2012, 17:16
@Beatrice Gatt
The old terminology was that of CFS. in 2011, there was an international consensus on the terminology and this was published by Carruthers et al. The first sentence of the article states:
"The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology."
It is very evident that what we know term ME are in fact a number of different entities with some common underlying conditions and thus treatment can never be a one fits all and hence the different and sometimes contrasting effects of the proposed medical treatment.
As further evidence to my argument, it was just very recently (21st April 2012) that the first paper showing a possible objective biochemical tests (levels of IL-1, TNFα, and neopterin) that corroborates Fukuda's criteria. These have still to undergo further larger scale studies so as to be used in the clinical picture.
Beatrice Gatt
May 7th 2012, 10:36
Mr Sant, I am very well aware of the International Consensus Criteria of 2011, in fact if you look carefully at these posts I referenced it and posted a link to it, several hours before you did. This still does not explain why in your original post you are posting information about Fibromyalgia and writing as though it were one and the same thing as Myalgic Encephalomyelitis. If you read the said International Consensus Criteria, Fibromyalgia is described as a "co-morbid entity". Fibromyalgia is not ME.
Please choose the reason of your report below: