CFS/ME: Specialities, Treatment and Miscellaneous Thoughts

One comment came from Douglas who encapsulates a lot of what people who develop this disorder will experience.

Classical type onset, viral infection followed by manifestation of the disorder. Thus, follows the endless barrage of tests followed by further endless and often fruitless consultants from various disciplines until eventually a diagnosis of CFS is perhaps made.

Here’s my own experience and opinion. The bottom line is that the vast majority of physicians (I’d estimate around 99%)getty_rf_photo_of_corticosteriods. have virtually no or very limited experience and understanding of CFS, let alone ME. It is not taught in medical school (in fact it was never mentioned in the 6 years I undertook in undergraduate training.) I have never come across a patient with this condition in hospitals and unless you have access to specialist centres (a rarity let’s remember to most), are unlikely receive a diagnosis, let alone effective treatments. As far as I remember, the CFS centre in Kings College London still recommend CBT and graded exercise as their main treatment options. One must remember that around 99% of patients with this disorder likely get treated under primary care with limited exposure to hospitals, let alone admission (I have worked in ED for a year and never had one patient admitted with such a disorder). Most of you reading this will have pursued referrals to specialists but they will investigate what they are familiar with and once they have exhausted their usual battery of tests, will re-refer or perhaps give you a diagnosis of CFS as a last resort.

The ME association in the UK has tried to provide information packs to primary case physicians in a boost to educate them on this condition but it just goes to show there is a lot of ground to make up on.

Truth is, despite all the emerging research, we arebigstock-Mitochondria-6997641 still not really closer to knowing the cause of this disorder. Yes, we know without a doubt there is a likely combination of trigger factors, something is definitely going on that is pathologically wrong, but even these signs (usually discovered under research conditions) points to a lot of different mechanisms without one single common pathway. Is this a neurological illness, a myopathic one, an immunological one, or as evidence demonstrates, probably a combination of all of these and more.

We and many others are in what I like to call in a grey area of medicine. Simply put, most physicians don’t have a clue how to recognise, diagnose and treat this disorder. Analogous to this and particularly for those unsure of a diagnosis of CFS/ME, you will likely waste a lot of your hard-earned money, particularly in North America where the cost can be excessively high, pursuing what you probably believe is an elusive diagnosis waiting to be uncovered with the lure of a potential cure. I have been down this road for 10 years and as a physician, I have had access to a ridiculous amount of blood tests, referrals to specialists, radiological and endoscopic investigations. Even CFS specialists will have their own take on treatments eg targeting inefficient energy mechanisms or dysfunctioning cell lines but there are no large-scale studies to show any benefit from ANY treatment. This may change as we make inroads but progress is slow and funding for research remains low compared to many other disorders which affect vastly smaller populations. Furthermore, a lot of research has been performed under small-scale groups with often poorly defined criteria and don’t at this stage contribute to any potential treatment.

Remember, this is a syndrome and is diagnosed by meeting the criteria as per Carruthers et al (2011). As I’ve already said and this is my own personal opinion (and many will disagree), I don’t believe you need to meet all these criteria to suffer from what in my personal opinion is a likely common pathway of disease. I see this as a spectrum of disease. ME is simply the end-point or the most severe manifestation of the disorder. This group has further pathological and genetic changes which destroy their quality of life and drive many of them to be house or bed-bound.

Traditionally, graded exercise and CBT were the only recommended options under NICE guidelines but CBT has shown little difference and ME patients will be in uproar over graded-exercise as current best evidence suggests this simply makes things worse. So we are left with anecdotal evidence or possible small-scale studies with which to pursue.

Some will travel to San Francisco to see a certain physician who will treat them with IV infusions of rituximab. A course of treatment costs over $600rituximab mab drug0. I don’t believe this is ethical given little evidence for this to date. We need replicated and larger scale studies (compared to the Fluge & Mella’s Norwegian 2013 one that made a tentative association between CFS symptoms to B cell abnormalities). Phase 2 trials are underway if I remember correctly with the possibility of Phase III trials so I will await these and the overall design study in general.

On a positive note, we are making steady progress and with more clearly defined cohorts and supported by double-blind placebo controlled groups, I have no doubt we’ll get to the bottom of a multi-aetiological disorder with the hope of proper effective treatments. We all want a quick cure but patience will be key!

All the best,

Dr RT

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5 thoughts on “CFS/ME: Specialities, Treatment and Miscellaneous Thoughts”

  1. When one considers the response from governments and insurance companies regarding the illness, (including vested interest in psychiatric care) the lack of funding for research and the lack of interest from pharmaceutical companies to sponsor clinical trials, patients who are sick and have been robbed of their lives will take desperate measures including off-label or 30 years still unapproved immunomodulation treatments in order to see for themseelves if that could help them. Physicians who treat this illness are our heros.

    There is plenty of off-label and unapproved treatments occuring in the cancer population and yet these treatments are given as compassionate access to these patients.

    It is one thing to be told to wait for clinical trials, yet they are not coming anytime soon, and these results will take years to come for the norwegian and the UK Rituximab trial. In Canada, 0$ is spent for research and we are just left behind, with no health care.Cthis is absolutely unacceptable.

    i disagree with you shooing physicians who have it in ther heart to help us the best way they can, because there are not that many out there. Mecidine and governments have better to offer.

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    1. Hi Milo,

      Agree with what you are saying. I’m certainly not trying to shoot empathic doctors or those that have a genuine interest in helping those with this condition. There is great comfort for us who finally find a doctor who takes the condition seriously & does their best to help us. But I do have a concern with those that offer treatments at great cost to many of us desperate to try anything without much in the way of replicated trials. I look at someone like Dr Enlander who offers his own treatments sold online which makes me somewhat concerned when there is limited evidence again for said treatments (often based on studies by said physician). Perhaps I am overly sceptical & cynical but ethically I don’t like to see us exploited financially. Some CFS specialists remain very reasonable in their costs & given the suffering, I would like to see cheaper access for all. But physicians have to make a living too. Of course it is our choice whether we choose to pursue any of these and thousands on the forums will put forward their own anecdotal evidence for various interventions.

      However, this is not like HIV in the 80’s and the emergence of the first anti retrovirals such as zidovudine which were in early trials but unavailable, coupled with the questionable influence of big pharma. Getting to and completing phase 3 trials can take a decade at a cost of usually $1 billion to pharmaceuticals for any particular drug and at present. My opinion is that this disorder has a significant autoimmune component but will likely need a combination of multi-modal drugs in order to target the many pathways that are dysfunctioning. Trouble is we don’t have a molecular target as of yet and this makes treatments a bit of a shot in the dark. But then again, many treatments for illnesses were found accidentally so i do hope the same might happen with CFS. W

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  2. What a great blog, thank you ! It is wonderful you, as a physician are writing about ME, that is so badly needed.

    Your point that “Simply put, most physicians don’t have a clue how to recognise, diagnose and treat this disorder.” is important.

    The fact is you may be better off not having any treatment than being harmed through ignorance- this is particularly the case , as our experience shows, in Severe ME.

    My wife who is very seriously ill, is much worse now, following well-intentioned, but disastrous attempts to help. The clinicians showed little awareness of the overwhelming potential for harm in Severe ME.

    That said, it is overwhelmingly difficult to keep going in the face of such relentless,extensive suffering. Yes, as you say there is progress, but the field has become so confused,the confusion between ME and CFS so blurred, it is hard to know what is helping whom : Rituximab for example does not seem appropriate for someone with classic Ramsay defined ME.

    My wife has been horrendously ill for two decades now, it is heartbreaking and deeply frustrating how after all this time, after so much untold struggle, ME is still confined to the grey area of medicine, you so accurately describe.

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    1. Hi Greg,

      It certainly is devastating for those who are severely affected and as you rightly point out, ignorance can often result in harm. In the face of such a reduction of quality of life, patients are often willing to try almost anything and are by and large all far better educated in this disorder than most physicians. Ask any random general physician if he has heard of something like any of the CFS criteria and you will likely get a blank response! Even CFS specialists differ quite dramatically in their offers of interventions. Some like Rituximab hold some promise but this drug has very significant and potentially harmful side effects so we do need to be cautious as to the extent that we are willing to engage in treatments. Doctors are a well intentioned bunch but treatment needs to be educated and based on proper research. As Hippocrates said, first do no harm!

      The flip side however is that it can also be the worst thing (certainly psychologically) in trying nothing at all because, well, taking anything at least gives us some hope that we might get some improvement in functioning. A lot of this may be placebo or related to the cyclical nature of the condition (which may be erroneously attributed to an intervention).

      But we and our families do need hope to keep us positive and moving forward day by day!

      All the best,

      Dr RT

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  3. I found your blog really resonates. I too am a Dr (GP) who has had ME for 2 1/2 years. I think as physicians with a first hand experience of this illness we are in a unique position to be able to evaluate the current diagnosis and management of ME – I think we should try to get together (virtually) to share our knowledge.
    Kate Down

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