Home from a long day of work today. First port of call, bed! Can’t really beat the comfort of putting ones legs up and relaxing. Muscles as usual aching like mad mixed with that ever present feeling of fatigue & weakness. My myalgia has been progressing far worse in the last 6 months and I have fewer periods of remission these days. Funny enough, I feel it worse when I am not active, perhaps a variant of post-exertional malaise as I am on my feet most of the day. I have a progressive form of CFS/ME, though retain at present a reasonable level of functioning.
I recognise I am in the minority of patients who continues to work full time. As a physician, you can imagine that it is also fairly taxing! Many have had to abandon work or try as best to work on a part time basis. Some have trouble simply trying to support their family. For the last 6 months, I have begun to question for the first time whether full time work is a realistic option for the future. Unfortunately like many places of work, this is simply not an option for hospital based medicine. I have made moves to switch to family medicine and working in the community as this lends itself better to part time work and one has to be realistic about one’s limitations. There is such a lure to stop pushing ourselves in trying to overcome our increasingly disabled bodies but I feel if I do stop, I know in my heart I would be unlikely to return. This is both from a personal and professional position. Hospitals etc simply don’t like gaps in ones CV’s and CFS/ME would be frowned on and treated with the same level of scepticism that all of you are so familiar with.
I will touch on this frustrating dismissive attitude and physician awareness of CFS in my next blog. I have a fair few anecdotes! As always, comments are welcome and I will do my best to reply as time permits.
Wishing you all the best,
Dr RT
As an side note, I am new to blogging and would appreciate if anyone could tell me if google will index this site? It would be nice to reach as large an audience as possible and I guess google is as good a place as any!
FATIGUE DOCTOR (THE LIFE OF A PHYSICIAN WITH CFS) 
My sympathies. I struggled with continuing to try to practice law for five years after the abrupt, post-viral onset of my CFS, but deteriorated bit by bit until I no longer could justify taking my boss’s money for the little bit of work I was doing. Two years later, off work the whole time, I’m no better. Rare ups, mostly downs. Still hoping for some kind of cure.
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If you feel better when active, I suspect you and I do not suffer from the same illness. Are you aware of the International Consensus Criteria for M.E. ?
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I feel the same way as libbyboone.
I had a full and rewarding professional life as a lawyer when I suffered the worst flu I have ever had in my life on Dec. 31, 1986, and I never recovered. I struggled along, sacrificing my personal and social life in order to work, until 1996. In March, 1996, I suffered paralysis and was unable to get out of bed. Unlike you, I feel that my continued efforts to maintain activity contributed to the worsening of the illness, Myalgic Encephalomyelitis, which was diagnosed by one of the recognized experts in the field. M.E. has destroyed my life. I believe that if I had known the nature of the disease and stopped pushing myself years earlier, I might be in much, much better health now.
Obviously, if you feel better after being active, you do not have the same illness from which I suffer. I and others with M.E. suffer terrible repercussions for being active beyond our “energy envelopes.” For example, the last time I ventured out of my house–for a medical procedure–I was bedbound for three weeks due to what medical professionals such as you like to call “malaise.: Let me be clear: the fact that I could not leave my bed for three weeks was not due to the medical procedure (a painless MRI). It was due to the fact that I continued to be active outside the energy envelope allowed by M.E.
You are not helping real patients with real M.E. by saying that you suffer from the same illness and you feel better when you are more active. What you are doing is spreading the nasty misinformation which has kept this illness hidden and suffering disrespect from medical professionals for the last 30 years.
If you want to learn more about real M.E., I suggest you read what real M.E.patients have to say about the disease which has devastated our lives. You can read a lot on MECFSForums.
Patricia Carter (J.D.)
Administrator
http://www.MECFSForums.com
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Hi Patricia,
Thanks for the comment. I am empathic of your frustrated reply likely borne out of the experiences you have had with doubtless hundreds of physicians over the years. Please see my other comment below as it touches on some of what you mention.
Yours,
Dr RT
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I suffer from me/cfs and as it happens my best friend suffers from fibromyalgia when he’s not in relapse he actually feels worse when he’s not active too although I am quite the opposite.
I am sorry and quite surprised the medical profession isn’t supportive of going PT or you taking time to get better.
I am on a phases return hoping to get back up to FT eventually but I think you are right sometimes you need to be realistic and accept that PT might be better.
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As you can see, your blog is receiving mixed reactions. Perhaps if you tell us more about yourself it would help. What do you lump under ‘fatigue’ – which specific diseases, what is the medical reason for the lumping?
You say you have CFS/ME, but patients with ME have post-exertional neuroimmune exhaustion/malaise/fatigue/symptom exacerbation/payback/relapse/debility as the key symptom. Yet you say that your myalgia is worse when you are not active. This leads the ME-literate to strongly doubt that you have ME.
I would appreciate knowing what diagnostic criteria you used. Did you self-diagnose or have you found an ME or CFS specialist in the your country? (I’m presuming UK from some of your references.)
Are you familiar with the Canadian consensus criteria (CCC), not only Canada’s national guideline, but also used by most expert clinicians and researchers internationally, http://www.phac-aspc.gc.ca/dpg-eng.php#cfs
the ME International consensus criteria
Click to access Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
and the IACFSME Primer, the US national guideline, which uses the CCC diagnostic criteria?
2014 update http://www.iacfsme.org/LinkClick.aspx?fileticket=zYEzLn11Ej0%3d&tabid=509
2012 http://www.guideline.gov/content.aspx?id=38316
the four 2014 conferences give a sense of what’s happening this year
Stanford http://chronicfatigue.stanford.edu/documents/ChronicFatigueSyndromeCME2014-FORMS-r3a.pdf
IACFSME http://www.iacfsme.org/Conferences/2014Conference/2014ProfessionalAgenda/tabid/535/Default.aspx
Invest in ME UK http://www.investinme.eu/agenda.html
Utah http://www.offerutah.org/2014conference.html
and finally, Harvards’ Dr A Komaroff (one of theauthors of the CDC’s 1994 CFS diagnostic criteria) did Stanford’s MedicineGrand Rounds in May 2014. He summarizes the thought and research in thefield.
Here is the link to the 30 min video. Please note it starts at 6:38 https://www.youtube.com/watch?v=VCowKm4N2Ow
Here are the slides https://www.dropbox.com/s/tidjgo4yjvh1s5b/Komaroff%20Stanford%20Medicne%20Grand%20Rounds%20May%202014.pdf
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A friend pointed out that I, and perhaps others, may have misunderstood what you were saying about your myalgia. You said, “Funny enough, I feel it worse when I am not active, perhaps a variant of post-exertional malaise as I am on my feet most of the day.” I understood this to mean that when you are active you have less myalgia afterwards, and when you are inactive you have more myalgia, which is contrary to my understanding of PEM.
However, my friend noted that you could mean that your.myalgia is worse after activity, rather than during it, which is consistent with PEM.
I hope you can clarify what you meant.
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Hi Leela,
Many thanks for the comment!
Indeed, your friend is correct in that I should have been clearer and more specific. In my case, I struggle with any form of exertion, walking, climbing stairs etc. I am not house or bedbound as in many of the online community but do push myself to my limits with what function I retain in order to remain active and working in a full-time capacity. Like I said, I am at the higher end of what I believe is a spectrum of disease with a common (though likely variance in expression) of dysfunctioning neuro-immunological processes. Others who are at the severe end of this disease, sadly don’t have this option as they might have all the will in the world but can barely get themselves to get out of bed. This is not factitious nor psychological but physiological in nature.
Also, pushing myself obviously as your friend correctly points out causes me to crash in a major way. I am literally bed-bound when I come home. Rest does help without question, though I only recover minimal energy. Myalgia is to the point where I need analgesia.
Apologies if this was not made clear. Will write on this in another post as it’s important to be clear on the definition of CFS (as an earlier poster correctly outlined as per the International Consensus released in the Journal of Internal Medicine in 2011). I will give my personal opinion on this and a critique of some of their findings.
Lastly, I do not profess to be an expert on CFS! This should be made clear. I am a hospital doctor in General Medicine with a very personal interest in CFS given my own suffering. I am simply offering my own take on the information and studies to date and my own experiences with the disease from the perspective of working in a physician community.
Thanks again!
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Thanks for the clarification RT. Look forward to hearing more from you. There are a number of doctor and nurse patients and carers. I always find the perspective interesting as it often bridges a gap between what are sometimes 2 worlds – how patients see the disease and how the medical profession does.
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Hi RT,
Actually, the International Consensus Criteria diagnoses Myalgic Encephalomyelitis, not CFS.
Thanks for the opportunity to comment.
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Thanks Libby, you are absolutely correct.
My oversight having just read it again. I’m general, for those unfamiliar with this criteria for ME. It was through a collective effort of recognised specialists aimed to further define CFS/ME and in doing so, move away from the prominent fatigue component in the definition to give a more prominent role to the other symptoms (& list, categorise and define these symptoms & make a stricter protocol). They also wanted the focus to be on abnormal dynamic exertional response , as opposed to simply general fatigue. As such, ME was the chosen definition. I believe the definition change, whilst welcome and overdue, will hopefully earn the condition and it’s patients a little more respect and tolerance.
Just to play devils advocate however, if ME is the above, what is CFS? Same type of disease? Just using older definitions? Perhaps a Iess severe end of a common disease pathway?
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I wonder if the difference between ME and CFS is more a matter of perspective and personal advocacy (bias) of which symptoms should define the condition, rather than the two being completely different complexes.
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Hi Douglas,
I couldn’t agree more. This is a contentious issue with those who have ME (which I will use as a subgroup defined by the new criteria). I’ve stated previously in an older post that I believe this disease is a spectrum. For instance, we still do not know why in children some develop Autism and Asperger syndrome. There are clear abnormalities but they are still defined by criteria but are now being viewed as not two different disorder entities but along the same disorder pathways: autism spectrum disorders. I genuinely believe this will be proven to be the case in ME/CFS. I will take this to a molecular level and evidence base in a further post which may get a bit more scientific but bear with me! Note that for research study groups, it remains worthwhile to recruit the severe groups, the ME subgroup if you will as these have the full blown disease with full expression of neuroimmunological dysfunction.
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Thanks, Doctor, for your enlightening response. If you had to pick one physician specialty to treat whatever it is we call it, what specialty would that be (at least to start with)? I have been to several GPs, an infectious disease specialist, two neurologists, an endocrinologist, a cardiologist, and a specialist at Stanford University who was doing a CFS study (Dr. Jose Montoya, who confirmed I have clssic CFS), but despite having given up 80+ vials of blood, all my blood work is normal limits and no cause can be identified. My CFS came on suddenly, when I was at the peak of health, but suffered two severe viral infections within a month (so it’s not psychiatric). Cipro helped the first viral infection, but nothing helped after the second. I’m completely normal, but debilitatingly sick. I cannot find any relief except transient tonics. Your blog and your followers are a Godsend. Many thanks.
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Hi Douglas, please see my reply below.
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Hi Douglas,
Have posted a blog on some of what you touched on. I don’t believe there is any specialist that will truly diagnose what you likely have as if you have CFS, all investigations will always likely come back normal. Syndromes by their vary nature are defined by symptoms and this is the trouble. We’d all love a simple blood test to know once and for all.
Out of curiosity, have you had an LDH lactate dehydrogenase level performed as well as a myositis panel (auto-antibodies to muscle) and CK?
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I’m an ME veteran of 20 years – 10 bedridden and critically ill, next 10 moderately affected (still largely housebound but no longer bedbound). I was a board member of a national UK ME charity for 14 years. You’ve unwittingly opened up a can of worms with the whole CFS v ME debate – it’s raged since at least 1996! I’m not going to comment really as it creates too much tension amongst everyone and that makes me feel ever sicker. My brief thoughts are on my blog post here https://mastcellblog.wordpress.com/2014/08/01/cfme/
I was really writing regarding your request for help with google. You’re best using Google webmaster tools http://www.google.com/webmasters/tools. You can then list your url directly with google and it indexes your blog so much quicker than relying on wordpress.
Other things to note in getting a good Google ranking are using the right tags, eg. CFS, ME, Myalgic Encephalomyelitis, chronic fatigue, and then specific tags for each post, eg. diagnostic criteria. Also, WordPress put your blog name, then the date in the url for you, and automatically include the name of each post but hyphenated – this makes for very long url names! I personally take the hyphens out and just use one word to name each post, so this one would be fatiguedoctor/wordpress.com/2014.07/07/work (when you create a blog post there’s an Edit button next to the title where you can alter the default post name).
Hope this is helpful!
Jak
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thanks Jak, this is most helpful. My understanding is however that i would need to migrate from wordpress.com to wordpress.org in order to avail of the webmastertools. Haeen’t really gotten around to that yet hopw to do to so soon.
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Mine’s a free wordpress.com blog and I still managed to use Google tools OK. You can’t embed any code in your blog pages, but you can still register the url with Google which makes them index your site quicker. I’ve had over 200,000 visitors to my blog in a year which I don’t think would have happened if I’d just relied on WordPress to index it.
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