Living with CFS

A second study,…

2010-08-23T23:52:00.002+02:00

… published Monday by the Proceedings of the National Academy of Sciences, confirm the presence of XMRV and other MRV-related viruses in a high proportion of chronic fatigue syndrome patients. Scientists found gene sequences from several MRV-related viruses in blood cells from 32 out of 37 chronic-fatigue patients but only 3 of 44 healthy ones.

Chronic Fatigue Linked to Virus Class
New York Times - 23 August 2010
When the journal Science published an attention-grabbing study last fall linking chronic fatigue syndrome to a recently discovered retrovirus, many experts remained skeptical — especially after four other studies found no such association.

Reference:

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors
Shyh-Ching Lo, Natalia Pripuzova, Bingjie Li, Anthony L. Komaroff, Guo-Chiuan Hung, Richard Wang, and Harvey J. Alter
PNAS published ahead of print August 23, 2010, doi:10.1073/pnas.1006901107

ZenMaster

One more step…

2010-04-02T13:38:00.000+02:00

… towards a treatment of CFS?
Scientists at University of Utah in Salt Lake City, Utah, and Emory University at Decatur, Georgia now report that several HIV drugs inhibit the replication of XMRV in cell cultures.

Here is the original report:
Raltegravir Is a Potent Inhibitor of XMRV, a Virus Implicated in Prostate Cancer and Chronic Fatigue Syndrome
Ila R. Singh, John E. Gorzynski, Daria Drobysheva, Leda Bassit, Raymond F. Schinazi
PLoS ONE 5(4): e9948. doi:10.1371/journal.pone.0009948

They write the following:
Principal Findings
Forty-five compounds, including twenty-eight drugs approved for use in humans, were evaluated against XMRV replication in vitro. We found that the retroviral integrase inhibitor, raltegravir, was potent and selective against XMRV at submicromolar concentrations, in MCF-7 and LNCaP cells, a breast cancer and prostate cancer cell line, respectively. Another integrase inhibitor, L-000870812, and two nucleoside reverse transcriptase inhibitors, zidovudine (ZDV), and tenofovir disoproxil fumarate (TDF) also inhibited XMRV replication. When combined, these drugs displayed mostly synergistic effects against this virus, suggesting that combination therapy may delay or prevent the selection of resistant viruses.

You can also read more at:
Powerful HIV drugs inhibit retrovirus linked to prostate cancer, chronic fatigue syndrome
EurekAlert! 1-Apr-2010
Anti-HIV drugs inhibit emerging virus linked to prostate cancer and chronic fatigue syndrome
EurekAlert! 1-Apr-2010

ZenMaster

More news...

2009-11-26T03:40:00.003+01:00

... in NY Times:

Expert Answers on Chronic Fatigue Syndrome November 24, 2009

Q&A on CFS.

ZenMaster

Some interesting news…

2009-10-09T15:45:00.001+02:00

Chronic Fatigue Syndrome and Prostate Cancer Link to a Retrovirus

A new study published online by Science links chronic fatigue syndrome to a possibly contagious rodent retrovirus, XMRV or xenotropic murine leukaemia virus-related virus, which has also been implicated in an aggressive form of prostate cancer recently. Related work by the authors also suggests CFS might best be treated with AIDS drugs.

The XMRV virus is a retrovirus, like the HIV virus that causes AIDS. As with all viruses, a retrovirus copies its genetic code into the DNA of its host but uses RNA – a working form of DNA – instead of using DNA to do so.

Known formally as xenotropic murine leukaemia virus-related virus, XMRV has also been found in some prostate tumours and is also known to cause leukaemia and tumours in animals.

Researchers found the virus in the blood of 68 out of 101 chronic fatigue syndrome patients. The same virus showed up in only 8 of 218 healthy people, they reported on Thursday in the journal Science.

Judy Mikovits of the Whittemore Peterson Institute in Nevada and colleagues at the National Cancer Institute and the Cleveland Clinic emphasized that the finding only shows a link between the virus and chronic fatigue syndrome, or CFS, and does not prove that the pathogen causes the disorder.

Much more study would be necessary to show a direct link, but Mikovits said the study offers hope that CFS sufferers might gain relief from a cocktail of drugs designed to fight AIDS, cancer and inflammation.

Previously a number of viruses, including herpes viruses, Enteroviruses, Coxsackie viruses and Epstein-Barr virus have been suggested as triggers for chronic fatigue syndrome. But these have only been found in a small minority of people with the disorder.

However, CFS researchers have long had their eyes on retroviruses. A number of the symptoms, including fatigue and cognitive dysfunction, can occur when the immune system is dealing with a viral infection, and the disease is often preceded by a flu-like illness. Although a number of retroviruses have been hypothesized to play a role in CFS, none has ever been confirmed.

About three years ago Robert Silverman, a biologist at the Cleveland Clinic Foundation in Ohio and a co-author of the new study, discovered a previously unknown retrovirus, XMRV, while searching for a pathogen that might contribute to prostate cancer. The retrovirus was very similar to MLV, a group of viruses that can cause cancer and neurological and immunological diseases in mice. Silverman found XMRV in a subset of prostate tumours, and more recent research found a stronger correlation between XMRV and aggressive prostate tumours.

Mikovits believes the association may be even stronger than the present work indicates. DNA sequencing only picks up active infections, she says, so she wants to study CFS exposure to the virus more broadly. In an unpublished investigation, she and her colleagues analyzed blood cells in about 330 CFS patients and found that more than 95% expressed antibodies to XMRV, whereas about 4% of healthy controls did.

Reference:

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome

Vincent C. Lombardi, Francis W. Ruscetti, Jaydip Das Gupta, Max A. Pfost, Kathryn S. Hagen, Daniel L. Peterson, Sandra K. Ruscetti, Rachel K. Bagni, Cari Petrow-Sadowski, Bert Gold, Michael Dean, Robert H. Silverman, Judy A. Mikovits

Science Published Online October 8, 2009, DOI: 10.1126/science.1179052

ZenMaster

Again…

2009-01-14T05:34:00.002+01:00

…I have not been writing for a long time. Some time ago, my father died after a short illness. He was 84, so I guess it was not completely unexpected, still difficult. However, around Christmas, I noticed that I anyhow had managed all that had happened around his illness, death and funeral surprisingly well – physically speaking. This betterment has continued now during January too, so maybe the extra weakness and pain from the hormone imbalances and pituitary surgery last spring finally is going away.

I also now know that the MR brain scan in September showed a ‘clean’ pituitary! They didn’t see any residual tumour tissue on those pictures. Of course, in the end, there could be some few cells left, that slowly will continue to grow again, but for now everything looks fine.

In the autumn, I was also referred to a new specialist, specialising in neuro-muscular diseases and genetic mitochondrial conditions that now are known from DNA sequencing investigations. I spent almost two hours going through my whole story, from 25 years ago until now, with him. Well, really my whole life story –medically speaking. He even asked about if I had noticed something already as a kid and when growing up. The result of this interview/discussion with him was that he was going to take some time and think about my condition and story, and if he could figure out something, he would come back. This was in early October.

Well, now last week, I got an appointment for taking muscle biopsies. Exactly what he is going to check I don’t know, and I really don’t expect anything new to come out of this. But of course, it is good that someone is testing something new about CFS. Maybe there is something wrong with the energy producers in the muscle fibres – the mitochondria’s.

I will have another, completely different test done too. My father died of a ruptured aortic aneurysm, and when I told my cardiologist about this at the yearly ultrasound check-up of my heart, he immediately referred me to the vessel specialists here at the hospital. The condition is much more common in male siblings of known patients, and furthermore they started general screenings of all men at 65 years here in Uppsala some two years ago. So the knowledge is present here. I only hope it has nothing to do with my known brain aneurysm, or the hiatal hernia I have had for a long time now. It could be a generalized weakening of smooth muscle cells in these structures, but it could also be specialised disruptions at each site causing the different bulginess. No one knows the exact reason for aneurysms or hernias.

ZenMaster

Today I had...

2008-09-12T05:18:00.003+02:00

... the first MR brain scan, again, after the surgery in March. Six months now since they were in and poking my pituitary. It's been some long summer months, mostly with heavy tiredness and pain in the muscles, but some short breaks for a couple of weeks when I felt better. Then again, tired, weak and in pain...

It has been disappointing; I had expected this summer would be better after so many years of weakness in my body. I try to convince myself (it only works from time to time... haha!) that it takes time for the body to adjust to the "normal" hormone levels. They are still exquisitely normal!!!

So, I expect the MR-scan will also show no residual tumour, at least not for now. It is strange how divergent our bodies can behave... I should be very well, but I feel like shit!

ZenMaster

Could these drugs...

2008-08-01T03:46:00.004+02:00

... be something that would work for CFS?

Researchers Identify Drugs that Enhance Exercise Endurance HHMI News - July 31, 2008

... Researchers have identified two drugs that mimic many of the physiological effects of exercise. The drugs increase the ability of cells to burn fat and are the first compounds that have been shown to enhance exercise endurance.

Both drugs can be given orally and work by genetically reprogramming muscle fibers so they use energy better and contract repeatedly without fatigue. In laboratory experiments, mice taking the drugs ran faster and longer than normal mice on treadmill tests. Animals that were given AICAR, one of the two drugs, ran 44 percent longer than untreated animals. The second compound, GW1516, had a more dramatic impact on endurance, but only when combined with exercise.

Ronald M. Evans, the Howard Hughes Medical Institute investigator who led the study, said drugs that mimic exercise could offer potent protection against obesity and related metabolic disorders. They could also help counter the effects of devastating muscle-wasting diseases like muscular dystrophy. Evans and his colleagues, who are at the Salk Institute for Biological Studies, published their findings on July 31, 2008, in an advance online publication in the journal Cell. ...

ZenMaster

There have been...

2008-08-01T03:44:00.001+02:00

... a few days of really hot summer weather here this and last week. The temperature has often been above 30 degrees Centigrade. THIS makes me feel great, at least less tiredness in muscles and less lactic acid-feeling in my legs! Everyone else (almost... hehe) complain about the hot weather, for me it is the ‘once-in-a-year’ time for some relaxing. I should already a long time ago, moved to a much warmer and sunny climate, I know!

ZenMaster

I’m still...

2008-07-22T22:50:00.001+02:00

... so extremely tired all the time. Today I was to an optician; I need new glasses for staring at this screen... hehe. The old one’s broke last week. After a long, almost an hour of checking my eyesight, she concluded that I should go back to an eye doctor before I get the new glasses. Some things were changed from earlier, and she could not (or would not) say if it was a result of the surgery, or ‘normal’ age-related changes. So now I have to find someone at the hospital – in the middle of their summer vacations, when many departments are closed – and try to pester them to give me a time as soon as possible! The Swedish healthcare doesn’t work particularly good during July and August – every doctor and nurse what their holiday then!

ZenMaster

It's been a terrible month...

2008-06-30T04:41:00.003+02:00

... as you see, I have not posted in a long while! It's been a terrible month. Tired like hell in all my muscles, not sleepy, but tired and weak. Not so much pain this time. I was put on some cortisone again early in June, by my doctor, but it had no effect. Last week when I talked to her again, she could not understand why I was feeling so bad. So, 8 more tubes of blood on friday to the lab, to check a lot of the hormone levels again was the 'answer'!

OK, ok, I do have CFS also, and that could be the explanation, but none of my doctors know anything about that, so I am just in limbo as usual.

Well, I guess I should wait and see until these latest blood tests are done, maybe it is something wrong with some hormone system after all? Who knows...

ZenMaster

Today...

2008-05-31T08:02:00.002+02:00

... NY Times has a series of articles about CFS. Not particularly informative, as usual, but still some attention to the problem!

Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’ NY Times - Saturday, 31 May 2008

ZenMaster

It's been some bad weeks again...

2008-05-29T17:03:00.002+02:00

... a couple of weeks ago, I stopped taking the cortisone I was administered after the surgery and removal of the pituitary tumour. While I was decreasing the dose, I started to feel extremely tired and weak. Now more than two weeks later, I still suffer from this extreme tiredness. I don't know why this happened, I though I would feel stronger when I could cut out the cortisone dose... hehe!

ZenMaster

Seven different genetic types of CFS’ discovered...

2008-05-06T13:12:00.002+02:00

Geneticists from St George's Hospital, University of London have identified a biological basis for seven different subtypes of chronic fatigue syndrome.

The research findings are to be presented to a conference in Cambridge.

Read more: Seven genetic types of ME' found

BBC - Monday, 5 May 2008 00:02 UK

ZenMaster

A biological link between pain and fatigue?

2008-04-08T06:10:00.002+02:00

A recent University of Iowa study reveals a biological link between pain and fatigue and may help explain why more women than men are diagnosed with chronic pain and fatigue conditions like fibromyalgia and chronic fatigue syndrome.

Link: U. Iowa study finds biological link between pain and fatigue

ZenMaster

I'm still...

2008-04-08T06:02:00.002+02:00

... recouperating from the surgery. It is getting better... slowly.

ZenMaster

I still feel like...

2008-03-12T17:27:00.002+01:00

...I have been smashed up on my nose and eye... hehe! The eye is running, and sometimes there is a little bleeding inside the nose. But on the whole, I have to say, it has gone pretty well. The worst thing: I had to shave off my moustache and beard, I have had for more than thirty years! My kids hardly recognized me; they had never seen me without it! Neither did I! I also have a lo of headache, so it makes me worried something is wrong.

But it was a ruff week, last week... But I guess it is just wait and see.

ZenMaster

Finally I have had...

2008-03-10T02:59:00.006+01:00

...my transsphenoidal surgery last week, to remove the GH producing tumour in the pituitary.

Well, it was a little more complicated than just up through the nose, they also had to go in and open up from the outside of the nose, close to the tear duct on one side and the eye, so I was cut at two places during the procedure. Therefore it took six hours, instead of the regular 3 hours for the transsphenoidal surgery.

This was a few days ago...

Everything seem to have been going well, I could go home already on Friday. Tired and weak, of course, but somehow already feeling better in many parts of my body that have given so many symptoms and pain the last several years. Well, I have to wait and see. In a month’s time, the endocrinologists will make a lot of tests, to see what have happened with the pituitary function.

ZenMaster

I wonder if...

2008-02-12T09:47:00.001+01:00

...this has anything to do with the extreme fatigue in CFS also!

ZenMaster

Fatigue relief drug's heart hope

BBC News, UK - Feb. 11, 2008

Scientists are developing a drug which relieves fatigue after strenuous exercise - and it could benefit heart failure patients as well.

Leaky Muscle Cells Lead To Fatigue

Science Daily - Feb. 11, 2008

What do marathoners and heart failure patients have in common? More than you think according to new findings by physiologists at Columbia University Medical Center.

Finding May Solve Riddle of Fatigue in Muscles

New York Times, United States - Feb. 11, 2008

One of the great unanswered questions in physiology is why muscles get tired. The experience is universal, common to creatures that have muscles, but the answer has been elusive until now.

References

Remodeling of ryanodine receptor complex causes "leaky" channels: A molecular mechanism for decreased exercise capacity

Bellinger, A. M. et al. Proc. Natl Acad. Sci. USA 105, 2198-2202 (2008).

Still haven't got...

2008-02-05T09:12:00.000+01:00

... any exact time for the surgery. When I called the hospital last week the co-ordinator hadn't made any progress yet in the planning. So, I am waiting for the phone to call... this waiting is like hell!

ZenMaster

Stopped taking the medication...

2008-01-31T17:27:00.000+01:00

This Monday, I stopped taking the medication for the pituitary tumour. It was the fifth attempt! I already feel much better, not so tired and no ache left in my legs anymore.

I also had a new appointment with the neurosurgeon, and he again is prepared to perform the operation instead. But it is a sensitive procedure, especially how my tumour is situated; he is not sure he will reach it the usual way. And since it is the third time he have planned for surgery, I am not sure he will do it until it is done! Backing off a couple of day's before the operation is planned is extremely emotional draining.

So, I just have to wait and see what happens next.

ZenMaster

One Reality with CFS...

2008-01-17T19:57:00.001+01:00

One reality with CFS is that there will be long breaks when you don't have energy or strength to do anything...

That is the reason for no post for a long time!

ZenMaster

This post will not be so much about CFS...

2007-09-19T02:53:00.001+02:00

I have not been posting for a long time. The reason: I have felt quite bad for all of this summer, not because of the CSF (even if that is part of the problem) but because of another condition I now have as well.

Some years ago, I noticed my hands and feet had grown and I also felt more tired and had a lot of pain everywhere. Yes, you heard right! My feet grew 4 sizes in about a year! It turned out I had a pituitary tumour that was producing growth hormone (GH), so my body in some respects started to grow as if I was in my teens again. Anyway, now two years later, my doctors have tried four different medications to stop this excessive GH production. Unfortunately, all of them have given me such bad side effects I have been forced to stop the treatments.

What I can figure out myself, these terrible side effects is post likely a result of my CFS! I get pain and even cramps in my leg muscles, much more chest pain than usual and also some disturbances in the heart rhythm and some other reactions like totally blocked out in my brain and ability to concentrate, when I take these drugs to curb this particular pituitary tumour. Most of the drugs have interfered with the dopamine system, so it’s a very complex interaction; the endocrine specialists doesn’t know or understand it themselves. It’s only because of my own knowledge and experience in cell biology I have been able to trace down some new findings and get some kind of explanation of why I have reacted this violently on the treatments.

This is not the only other medical problem I have had in the years before. But I might come back to that later some time.

I’m not complaining. I only tell my story to say it is possible to survive even when you suffer a lot constantly. I guess it is because of our intrinsic ability to adapt to what we feel in our bodies, as human beings. The ‘only’ difficulty has been how friends and even family disappear when it gets ruff... instead of staying and supporting. It could happen to anyone! It’s our biological fate.

Anyway, now after two months, I am mostly off all these side effects I have experienced this summer again. On the other hand, what is waiting is for my doctors to decide on surgery of the tumour or not instead. I am waiting for this decision this week. It is really a tiny operation, right through the nose bone and into the part of the brain where the pituitary sits, but it is a delicate procedure. I’ll just have to wait and see.

ZenMaster

Here are some references...

2007-08-21T12:54:00.001+02:00

...to the original work I talked about in my previous post. If anyone is interested I can send you a more complete list. Just send me an e-mail and ask for it!

ZenMaster

References related to energy metabolism in CFS:

Assessment of cardiac metabolic disorders with positron emission tomography.
Waldenstrom A, Langstrom B. Curr Opin Cardiol. 1991 Dec;6(6):965-71. Review. PMID: 10150067 [PubMed - indexed for MEDLINE]

Human uterine smooth muscle exhibits a very low phosphocreatine/ATP ratio as assessed by in vitro and in vivo measurements.

Steingrimsdottir T, Ericsson A, Franck A, Waldenstrom A, Ulmsten U, Ronquist G. Eur J Clin Invest. 1997 Sep;27(9):743-9. PMID: 9352245 [PubMed - indexed for MEDLINE]

Ionophoric action on the cellular membrane as a pathophysiological mechanism in syndrome X: myth or reality?

Waldenstrom A, Ronquist G. J Intern Med. 1995 Sep;238(3):187-9. No abstract available. PMID: 7673847 [PubMed - indexed for MEDLINE]

Disturbed energy balance in skeletal muscle of patients with untreated primary hypertension.

Ronquist G, Soussi B, Frithz G, Schersten T, Waldenstrom A. J Intern Med. 1995 Aug;238(2):167-74. PMID: 7629485 [PubMed - indexed for MEDLINE]

Coxsackie B3 myocarditis induces a decrease in energy charge and accumulation of hyaluronan in the mouse heart.

Waldenstrom A, Fohlman J, Ilback NG, Ronquist G, Hallgren R, Gerdin B. Eur J Clin Invest. 1993 May;23(5):277-82. PMID: 8394817 [PubMed - indexed for MEDLINE]

Phosphocreatine turnover and pH balance in forearm muscle of patients wit syndrome X.

Soussi B, Schersten T, Waldenstrom A, Ronquist G. Lancet. 1993 Mar 27;341(8848):829-30. No abstract available. PMID: 8096030 [PubMed - indexed for MEDLINE]

Angina pectoris patients with normal coronary angiograms but abnormal thallium perfusion scan exhibit low myocardial and skeletal muscle energy charge.

Waldenstrom A, Ronquist G, Lagerqvist B. J Intern Med. 1992 Apr;231(4):327-31. PMID: 1588255 [PubMed - indexed for MEDLINE]

Low energy charge in human uterine muscle.

Wedenberg K, Ronquist G, Waldenstrom A, Ulmsten U. Biochim Biophys Acta. 1990 Jan 29;1033(1):31-4. PMID: 2137351 [PubMed - indexed for MEDLINE]

Now comes the big news...

2007-08-11T15:24:00.001+02:00

...even though it is almost twenty years old!

In the late 1980-ies and early 1990, my cardiologist together with a biochemist at the hospital designed and performed a series of experimental investigations that really turned out to give some new results on what is wrong when you have CFS.

In short, something is wrong with the energy consumption, or as we cell biologists say the ATP metabolism. ATP is the prime energy molecule in cells, and most of it is produced in the mitochondria of cells. It was not that there is too little ATP, on the contrary the synthesis in my heart or skeletal muscle cells were 3-5 times the normal when tested on biopsies. Still, after only a few minutes work, the ATP levels could drop to only 10 or 20 percent of the normal values, while in normal people it only decrease 10 or 15 percent in total, during the same conditions. Furthermore, it took more than an hour of rest to regain the ATP levels I should have, while the control persons got their ATP back within a few minutes.

Another observation from these experiments was that the acidity, or pH value, inside the muscle cells dropped dramatically, from the normal 7.2 down to 6.0. This was so extreme that no one had seen before, and was believed the cells shouldn’t survive, but obviously I did – well my muscle cells was live and had no ultrastructural damages seen in many other conditions. When this result was repeated at several occasions, and with different techniques, we had to believe they were correct. The low pH was also related to production and release of large amount of lactic acid in the blood.

All these experimental data fits so well with the clinical picture! I can move around, but slowly in order to not ware out totally. However, when exercised in some way – like walking for a while slowly – it can take more than a day, even two days before I am back to my “normal” level of strength. And I still feel – always – as I have been running a marathon in my legs. That is a lot of lactate all the time, giving me muscle ache.

Later, I will try to tell more about the specific tests that were done – give more technical details – because I think this is a very important finding they did, not only on me but on a small group of people with CFS here where I live. However, it was never noticed at other research places, even though most of these results were published in scientific journals. One explanation could have been it was rather difficult and complex experiments to perform, but I really don’t know why.

Well, so much for my story today. No treatment came out of this, and I still suffering the same way, untreated. And the reason for this metabolic disturbance, the original cause, is still of course obscured.

But if you want, go ask your doctor about these things! Maybe there are someone that will be able to take up this again, and come a little further!

ZenMaster

Sometimes, everything slows down...

2007-08-10T05:47:00.001+02:00

Sometimes, everything slows down...

... like the last week. And this...

ZenMaster

What an excellent machine...

2007-07-31T17:10:00.001+02:00

What an excellent machine a computer is, particularly when you have CFS. I can write a sentence, or sometimes only a half, save it to some later time when I feel a little better, go back, write more, rewrite, find words or information in small bits and pieces to add, and then, after a while this kind of coherent text appear! I don’t know how coherent I am in my thoughts, but at least it looks quite impressive to me when I see this growing after a while! Hehe...

To continue my story: I guess I had my moments with my doctors, since I am a cell biologist by training and fascination. I’m not a medical doctor, just a Ph.D. who have worked with cells, how they are built, look like, grow and function, so I know some details about life in general that doctors don’t know! (Hehe...there I got it!). Of course, this was a problem as much as a strength. I probably got in conflict with half of the doctors I met, because they couldn’t take a patient knowing more about some details that they didn’t understood. The rest half could grudgingly accept my questions – and order some more tests – and then there were one or two that really could talk and discuss with me what was going on, what they knew or not, and even come up with new ideas to test together! I guess I was lucky after all! But the first such doctor came to the cardiology department I spent a lot of time at, only 2 or 3 years after I became ill the first time.

During these first years, I had numerous ultrasound tests of the heart, gamma-camera tests, and coronary angiograms, not to mention all kinds of regular blood tests. None of these showed there was really anything wrong with me.

I had my mitral valve prolapse, but that I knew of before, and probably have had all my life, and it was perfectly constant, so it hadn’t change and wasn’t an explanation to my sufferings.

OK, they could see some smaller areas in the heart muscle that had ‘some’ sort of disturbed micro-circulation from the gamma cam pictures; the capillary vessels didn’t allow the blood to flow properly at times. But this finding was varying from time to time, different areas and different extent, so they really didn’t know what to do about it. Anyway, at this point, I got a diagnosis: negative angina or spasm in the capillary blood vessels in the heart!!! The older female cardiologist explained it as ‘sometimes we see patients with the same symptoms as with angina pectoris, but they don’t have any blockages in their big coronary arteries’. Later I learned that up to 10-30 percent of angina patients are in this group!

Well, this prompted the doctors to put me on beta-blockers, calcium-blockers, digitalis and a few other conventional heart medications. Of course I didn’t get better, but I took them for years anyway, silly as I was. Sometimes I had as many as 12 to 15 different pills to take every day! And, ohh yes, nitro-glycerine in various preparations: fast working pills under the tongue, slow releasing to swallow, drip when I was at the hospital, even a paste to put on the chest twice daily!

Well, at least they tried to find something that would help! What a guinea pig I was, but THAT I didn’t mind! Better try something than being ignored!

This weekend...

2007-07-31T14:52:00.001+02:00

This weekend has been harsh. That’s why I haven’t blogged for a few days. But that’s how it is living with CFS, some days are worse, some days are less bad, none are good!

ZenMaster

That first summer...

2007-07-29T10:14:00.001+02:00

That first summer, my then wife really didn’t understood what was going on with me, and got very annoyed about my ‘laziness’, as she put it. Our two kids were still very young, about four and two years respectively, so of course it was a busy time with them. We both also had advanced jobs, which took much time and effort for both of us. I never questioned that I was ill this first period of time, you don’t do that when your body play such tricks with you, and give you such sensations as when you first come down with CFS. You really feel something is wrong throughout your body, if you have strength enough to think at all! The questioning came later, and I would say exclusively because of people surrounding me, constantly questioning my state, saying like: “You don’t look ill, so why don’t you go about your life as usual” and other similar things. You have certainly heard all these comments yourself! Well, anyway, that first year after becoming ill I went through a LOT of tests and investigations at the hospital, I guess since I originally was placed at the cardiology department, but also because my own opinions! I knew something was wrong in my body, and I was constantly nagging and after the doctors, asking questions and demanding answers, even if it would be “I don’t know”. This is of course the most difficult answer a medical doctor can give! Not for the patient, but for him/herself! Now my energy is depleted in my brain, so I will have to continue later....

It all started...

2007-07-28T23:08:00.001+02:00

It all started one weekend with an intense flu-like condition. It didn’t extend more than two or three day, but I experienced severe chill, muscle ache and general malaise. After that I felt OK again. Three or four week later, I suddenly developed chest pains and became more and more weak and just wanted to sleep. Since this was during the summer holiday I didn’t do anything special, just trying to take it easy, and slept all the time. Later I started also t develop joint pain, in my ankles and knees and hands. A month and a half later when I was supposed to go back to work, it didn’t work at all. I ended up at the emergency room, at the university hospital where I lived. This was some 27 years ago. Since I had significant chest pains still, and had been in contact with cardiologists at the hospital before (I had a minor mitral-valve prolapse discovered a few years earlier) I was put in the cardiology ward. Over the next year(s) I spent more time there than home, running tests, just resting with extra oxygen, or getting morphine to ease the pain; getting back because of severe chest pain and fatigue outbreaks, checking for heart infarct, which they of course never found any evidence for. Half of the doctors said I was imagining, being a hypochondriac, half didn’t know what to say, and then there was this older, experience female cardiologist who told me that “I have seen this many times before, but we don’t know what it is”! Well, so much for today. I will tell the rest of the story later... I’m sure this is not a unique story about how CFS can present itself, on the contrary quite common.

Living with Chronic Fatigue Syndrome

2007-07-28T21:46:00.001+02:00

I have had Chronic Fatigue Syndrome (or CFS) since the mid-1980. Here I will try to tell about my daily life and how I am coping, give hints about what is known about the causes of CFS, and stimulate discussions between fellow sufferers. Even if the condition have been known for quite some time, only now at a few places, it is taken seriously and is called a real disease. But we all know that - we with CSF.