Chronic Fatigue Patients Not Welcome

Well I guess that they don't read my blog down at the Canadian Blood Services.  Back in February I bemoaned the fact that the exciting news of a viral cause of chronic fatigue syndrome (XMRV virus) and possibly fibromyalgia had been dashed by the inability of other labs to replicate the findings.  It seemed like a long shot anyway, but still it was disappointing.  But now we hear that the Canadian service responsible for blood collecting is the first in the world to put patients with CFS on their not-welcome list, specifically because they are worried about viral transmission of the disease through blood transfusions. Not terribly scientific but I guess it's hard to blame them for being a bit jittery.  Canada was a little slow with HIV/hepatitis C  testing back in the eighties, and many people were infected through blood product use.  In fact, the new Canadian Blood Services arose from the ashes of the previous collectors, the Red Cross, relieved of their duties because of those infections.  I wouldn't be surprised if the French do the same.  People there went to prison for the same reason.  At first I thought that this would mean a big drop in donations, given that so many people have CFS and fibromyalgia, or at least enough to fatigue to think that they may have the disease.  But then again, if you're dead tired all of the time, I don't think you're thinking of giving blood all too often.  And who knows, science seems to be making quick work of this virus theory anyway.  It might not be too long before the gang at the Canadian Blood Services can relax once again.

 

Comments

[Helen]

I've also been told I can't donate blood because I have RA and have taken methotrexate. When I went in to ask, they explained that even if I was not currently taking mtx, the fact that I had taken it in the past would preclude me from donating.

I'm not sure I understand why.

[peter wa]

That is a strange word to use - "unscientific". Until the original study is positively negated what is the problem with caution? The followup studies left enough questions unanswered. The Dutch study particularly is totally irrelevant - having studied a handful of tired, depressed people that picked themselves as having the disease. And excluded any that may have had viral infections. Funny way to find a virus. These guys need to get with the consensus case definition or stop pretending they're studying the same disease. There may not be a link to this virus. But that remains to be proven. Apparently one or two less superficial studies are underway in the US.     

[3+speckled]

peter wa

In these parts blood is a rare commodity and we are constantly being made aware of this by the blood collecting agencies. If this is the case, removing a group of patients from that pool may mean that someone on the other end will not get blood or platelets. The evidence connecting this virus with this disease is very slim. One study alone, which has been refuted by two others (note, the British study of 170 CFS patients found no patients at all carrying the virus). Even if the study was right it only shows an association and not yet cause and effect. And even if it was the cause we do not have evidence it can be transmitted through blood. And if we do consider it to be a threat we should screen for the 4% of the normal population that would seem to carry the same virus as well as fibromyalgia patients which the authors claim are likely infected. Being cautious is a good thing but is also the easiest thing to do. I hope they are being cautious for the patients, not for themselves.

[3+speckled]

Helen

That sounds odd. I'm going to try to see if that is the case here.

[3+speckled]

Helen,

Just checked the American Red Cross. They allow donation 4 weeks after stopping methotrexate and 3 months after leflunomide. Canadian guidelines aren't on their website.

[Helen]

Interesting - thanks for looking that up. This was a couple of years ago, so I wonder if things have changed - or perhaps the person I spoke to was mistaken.

[Penelope]

Many years ago I went to donate blood and was told that I couldn't give any because I had mono as a teenager. I'm not sure if that is still in effect.

One thing I can say is that I have never felt 100% back to the way I did pre-mono, and have always wondered what long-term effects might have come with the virus.

[ftiens]

Fatigue is generally common among adult of working group & becomes chronic if not treated.its sounds old but i think recent studies have been carrid on that. lets educate readers what chronic fatigue is all about, it is the most common name given to a variably debilitating disorder or disorders generally defined by persistent fatigue unrelated to exertion, not substantially relieved by rest and accompanied by the presence of other specific symptoms for a minimum of six months. Many patients do not fully recover from CFS even with treatment, and there is no universally effective curative option.Diets, physiotherapy, dietary supplements, antidepressants, pain killers, pacing, and complementary and alternative medicine have been suggested as ways of managing CFS.
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[beli]

this is a newly established syndrom that describes a combinations of symptoms like low grade fever, lymph node swelling, headache, muscle and joint pain..... u can visit http://www.tienseshop.com and http://www.tiensstore.net