I still have a degree of fatigue following my chemotherapy. It is getting better, but I am still apt to fall asleep during the day. Next week I am going to restart some graduated exercises.
There are studies that show that graduated exercise following chemotherapy not only improves one's clinical situation, but also makes one live longer. Last time I started this program in the middle of my chemotherapy, I collapsed and had to abandon it. I was suffering from postural hypotension from an autonomic neuropathy. Since I have started on dexamethasone 4mg, my autonomic neuropathy has improved, as has my peripheral neuropathy. One strange effect has been that whenever I eat, salivation leads to my nose running.
In the world of chronic fatigue syndrome there has been uproar at the apparent proof that the suggestion that it is all due to a mouse retrovirus was down to a laboratory error and that CFS existed long before this fusion virus was created in a laboratory.
I feel a bit responsible for the idea that a virus might cause chronic fatigue, because I published a paper in the British Medical Journal in 1983. Here is the abstract:
Immunological reason for chronic ill health after infectious
mononucleosis T J HAMBLIN, J HUSSAIN, A N AKBAR, Y C TANG, J L SMITH, D B JONES BRITISH MEDICAL JOURNAL VOLUME 287: 85-88 9 JULY 1983
In a group of patients who suffered from chronic ill health after an attack of acute infectious mononucleosis a disorder of T cell regulation was found. By means of cytochemical reactions the staining pattern associated with T suppressor cells was found in a greater percentage and that associated with T helper cells in a smaller percentage than in normal subjects. In a few patients this finding was confirmed in a functional suppressor assay. The patients were unwell for at least a year but most later made a complete recovery, which was associated with return to normal of the lymphocyte subsets.
I was quite interested in this subject at that time and even conducted a small clinical trial with the anti-worm drug, Levamisole, which had been shown to boost some aspects of the immune response in a non-specific way. There was no effect.
I was being referred patients from my esteemed colleague, Chris Moran, and I was surprised at the variety of patients I saw who all had this catch all diagnosis, ME or CFS. Some were indeed post-glandular fever. I estimated that most patients with infectious mononucleosus caused by EBV got better within 6 weeks of catching the disease. A small group were unwell for about 6 months and an even smaller group remained unwell more of less permanently.
But in the majority of patients with ME/CFS the condition had nothing to do with EBV. Some had had CMV or toxoplasmosis, some were clearly depressed, occasionally there was a strong family history and I remember one woman who developed the syndrome after being bitten by a grey squirrel.
The symptomatology was different, too. Some patients just complained of tiredness; in some of these exercise made it worse. Some complained of painful muscles but not all did. Some complained of an inability to concentrate and some had all three symptoms.
My conclusion when I left the field was that this was not one syndrome, that some of the symptoms were similar to those seen with treatment with interferon so that cytokines may be involved, that since viruses are one way of triggering cytokine release, in some cases there might be a chronic viral infection, that in some cases there was chronic depression whether as the cause or the effect of the syndrome, and that there were a lot of cranks associated with the syndrome who were convinced that they were right and everybody else was wrong. In my view everybody was right and everybody was wrong and those who were most switched on were those who admitted their ignorance about the field.
When I got involved in CLL it was clear that there were similarities in the fatigue associated with CLL and the topic of 'chemo-brain' as well. (Perhaps cytokines were involved again). When I started on chemotherapy I appreciated the reality of both these conditions. I also recognized that high doses of steroids gave me mood swings and that the knowledge that I had an incurable cancer sometimes made me depressed.
There was a big ME/CFS conference in Lons=don in May 2011 called "Invest in ME". Even the title of the Conference gives away that this was very self-centered. There has recently been a large clinical trial on this condition published in the Lancet which concluded that the only effective treatment for this syndrome is cognitive behavioral therapy (CBT) with graduated exercise. This paper has roused the ire of patients who see that they are being labeled as nutcases, CBT being the preferred therapy for chronic depression. Psychiatrists who follow this line have been subjected to outrageous persecution by patient groups, even being reported to the General Medical Council, which has behaved in its usual callous and unthinking manner. (I shall be very glad next month when I resign from being a licensed doctor and no longer have to pay any more fees to this disgusting organisation).
If you have access to the current BMJ you will be able to read several articles on this topic. You could start here