When doctors cannot diagnose disorders
Nicola Reiss
Nicola Reiss woke up one Boxing Day feeling extremely unwell. She had pain all over, her ribs ached and she was running a fever
“It was as though I was involved in a boxing match,” she recalled.
The doctors thought the 51-year-old woman had malaria. She was lucky to be a foreigner in Rwanda as, according to her, foreign patients are treated seriously there.
However, endless tests would prove that Ms Reiss, who now lives in Malta, did not have malaria. Two years of fatigue and pain later, one brave Maltese doctor told Ms Reiss she had Myalgic Encephalomyeltis (ME).
The problem with this condition, also known as chronic fatigue syndrome or post-viral fatigue syndrome, is the controversy surrounding it. There is no test to diagnose the syndrome and diagnosis is only made when a certain set of symptoms are displayed. These can vary in type and severity.
While, on one hand, doctors seem reluctant to diagnose this condition because the science around it is not as yet concrete, patients feel misunderstood and unaccepted.
Although local figures on the number of people affected by ME are currently unavailable, some 250,000 people are said to suffer from the condition in the UK alone.
Beatrice Gatt, spokesman for the ME support group Malta, said the hospital should have an inter-disciplinary outpatient clinic and an outreach programme for better medical understanding. The support group also called for government recognition for disability benefits.
Patients who spoke to The Sunday Times have voiced frustration that many doctors do not bridge the condition to the symptoms they complain about.
“Doctors don’t make a distinction between ME and people who are tired for other reasons,” Ms Reiss said.
Another patient, who preferred to remain anonymous, said: “When I suggest my hoarse voice may be caused by ME, they just shrug it off.”
This is not the first time the medical world struggled to accept a condition that science had not yet proven. At the beginning of the 20th century, the now renowned asthma was seen as a psychosomatic disease – one that is mainly influenced by the mind.
Treatment involved psychoanalysis as its primary component. A child’s wheeze was seen as a suppressed cry for his mother.
Psychoanalysts thought that patients with asthma should be treated for depression. This theory was eventually refuted and asthma became known as the inflammatory condition it is treated as today.
Although the cause of ME is not yet known, there are various theories – but none is proved. A popular theory is that a viral infection may trigger the condition.
The latest scientific breakthrough linked a second type of mouse virus to ME.
Although the findings do not prove the virus causes ME, the scientists found evidence of murine leukemia virus in 86 per cent of ME patients they tested, but in fewer than seven per cent of healthy blood donors.
This has also raised questions about the safety of blood donations from ME sufferers, as international talks of banning donations from ME sufferers are underway as an interim measure.
ME has been classified as a nervous system disorder by WHO, and although the term “encephalitis” suggests inflammation in the brain or spinal cord, there is no evidence to support this.
It is characterised by chronic fatigue, associated with other variable symptoms which include widespread muscle and joint pain, sleeping difficulties and depression.
The severity ranges from one sufferer to another, and while some people may live a relatively normal life, others like Ms Reiss are unable to work due to the severity of their symptoms.
Although the controversy exists, people tend to agree on one thing: patients are hurting. As one doctor who spoke to The Sunday Times put it, “We cannot endorse what we cannot see. What we know for sure is that they are suffering.”
Popular Stories
Update 3: Marsa murder - Police looking...
Update 2: Three arrests after flamingo...
Former Judge Ray Pace found dead
Where’s Everybody staff is given notice
Revealed...the face of a Maltese woman...
Update 4 - Eddie Fenech Adami stable...
Update 3 - Woman trapped as car crashes...
Updated - Two bodies, capsized boat,...
Franco Mercieca doing routine eye ops at...
In Discussion
Update 2: Three arrests after flamingo...
Enemalta seeking minimum five year gas...
Mario de Marco, Zammit Dimech concede,...
Chinese company to study Malta-Gozo...
Updated - PM reacts to Labour anger on...
Franco Mercieca doing routine eye ops at...
No appeals board for first part of power...
Updated - PM comments as Franco Mercieca...
BBC site highlights illegal hunting in Malta
12 Comments
Post comment
Please sign in or create your Account to post comments.
John Greensmith
Sep 1st 2010, 16:22
The headline may be read as an incomplete sentence, to which the consequence could be added: millions of people, worldwide, are left isolated because, when all tests, to exclude other illnesses, have been conducted, further investigation ceases. Patients are too ill to get to the doctor, who has nothing to offer them and the doctor won't make a house call
Some doctors, do diagnose Myalgic Encephalomyelitis: then, patients have a diagnosis that they are genuinely ill, not merely fatigued, due to overexertion, which might be remedied by lifestyle changes and that they are definitely not malingerers.
A new retrovirus, XMRV, in 67% of sufferers but only 4% of matched healthy people should stimulate trials to discover whether there is a causal relationship and possible treatment by antivirals. XMRV might be a catalyst for other viruses dormant, or recurring, which might explain, why some people who become infected with viruses get over them, never to be troubled again, while others have M.E., possibly for life. But the work has had to be conducted using private funding, against a sceptical and sometimes hostile opposition.
Dr John Greensmith
[email protected]
+44 (0) 117 956 0150
Bristol, UK
Jackie LEEVERS
Aug 31st 2010, 00:00
I thought at first that this article was a thoughful piece trying to understand what people ME were going through. Started well but a couple of statements showed that little journalistic research had been done on the latest research and what people with ME say about their conditions.
Most glaringly for me, ME is not characterised by depression: depression is a result of many long term illnesses especially where there is chronic pain, including ME, but it is far from a symptom. To sum it up with a short list with chronic fatigue as the main ingredient really doesn't do it for me either.
I keep hoping that some journalist somewhere will write something that I think 'fair play' to - but it's not happened yet.
Jo Best
Aug 30th 2010, 21:08
Thank-you for an excellent article highlighting the disgraceful lack of knowledge in the medical profession about this disabling and potentially fatal neuro-immune disease. I say disgraceful because over 4000 science papers have been published over the years showing the biology at work in M.E; spuriously renamed CFS under the guidance of psychiatrists with new criteria written by them. Links to some of these can be found here:
http://www.investinme.org/InfoCentre%20Library.htm
M.E has been known as post-infective for decades, originally defined by Melvin Ramsay with no mystery attached to the disease, other than the actual processes at work that do damage in most of the body's systems; hence it's alternative term in WHO of PVFS. It has long been linked with viruses too, including a retroviral link found 20 years ago by Elaine DeFreitas.
May I correct that there IS evidence of inflammation to the spinal cord and basal root ganglia, as shown in autopsies when carried out, eg Sophia Mirza, and multiple brain lesions show on SPECT and PET scans, but these are rarely done; the scanners are costly and not commonly available. Encephalomyelitis is, therefore, the correct word.
Also, M.E is characterised by neurological problems and post-exertional malaise, not chronic fatigue.
Beatrice Gatt
Aug 30th 2010, 13:07
The most recent scientific paper published by the FDA in the US, provides a biomarker for the disease, hopefully closing the debate for a psychological cause. It doesn't prove causality or provide a cure. However there are significant remedies which can simprove patients' quality of life, which most doctors here in Malta are not aware of or are reluctant to recommend since they are not yet scientifically proven. http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1283:managing-my-me-me-association-publish-results-of-huge-survey-report&catid=30:news&Itemid=223
C Zammit
Aug 30th 2010, 10:26
How right is Mr Chris Grillo . I have been seeing Drs etc for these last three years and all blood tests etc proved negative and i'm told there is nothing wrong according to the results .All I get when I see a Dr is anti depressants which when that happens does make me depressed ! It is a misunderstood condition . The overall pain I would not wish on the devil . Now I have resigned myself not to seek anymore medical help for these aches and pains as I feel it is a waste of time . I pray God I can endure it all without too much upset for my family .
Chris Grillo
Aug 30th 2010, 13:21
I am sorry to hear of your pain.... Fibromyalgia attacks with no particular rhyme or reason. To this day I cannot understand why or how.
It is the nerve endings that are affected. I used to be in constant pain and always ready to drop off to sleep, except that I could not...I used to go to work at 4am, and my IT section thought that my punch card was faulty... but I used to make the most out of the quiet...
I suspect this started after I had glandular fever...most probably contracted after hugging one of my little daughters on her return from school...they bring so much stuff home with them don't they?
Suddenly, one fine day, after some 4 or 5 years, I woke up with no problems at all....about the only good thing was that I lost a bit of weight...
This condition is widespread across many nations, particularly USA.
Stephen Florian
Aug 30th 2010, 10:00
This situation should be taken very very seriously as it can destroy a person's life. I think it is worthwhile to raise more awareness about it on a national scale. So thank you for this article.
Chris Grillo
Aug 30th 2010, 07:45
To those commenting with a certain humour, there is nothing funny in this. Like Ms.Kreiss, I also passed through an extremely similar condition. FM, or Fibromyalgia leaves the patient feeling as if he were drugged. Sleepless nights, pain, extreme fatigue... and no doctor could diagnose my pain...
When the company doctor called (sick leave for flu'), he immediately diagnosed what it was...from then on the condition worsened until it was practically impossible to even walk quickly.
Unfortunately it progressed to Rheumatoid Arthritis and then Ankylosing Spondilytis...
The thing is that FM or ME leaves no apparent damage behind it, or none is visible in MRI's or X-Rays... how can you explain that to people... they think you are losing your marbles. Everyone told me that it was a psychological thing... but I had nothing to worry about apart from the usual niggling problems of life... I was a fit, sporting type... reduced to but a shadow of my former self... (three shadows' worth actually).
Now I take twice weekly inoculations (very expensive) which the government provides... without them I am immobile...
david spiteri
Aug 29th 2010, 21:05
sounds like a Dr House episode :)
edward bartolo
Aug 29th 2010, 14:00
Quote: "Although the cause of ME is not yet known, there are various theories..."
Those are properly called hypotheses. When a hypothesis is proven repeatedly, it can then be accepted as a theory, but not before.
Mrs I Thorpe
Aug 29th 2010, 13:39
Thank you for covering Me in your paper . It is a devastating illness but are you aware of the recent findings from America where it has been shown by the WPI and now confirmed by the man who discovered hepatitis C that the majority of patients have evidence of MLV and XMRV and the majority of countries are now banning people who have ever had a diagnosis of ME or CFS from giving blood.
please read this article
http://oneworldscam.com/?p=7574 as it gives links to other reports
Irene ME sufferer for over 23 years
C Sullivan
Aug 29th 2010, 12:50
'Psychoanalysts thought that patients with asthma should be treated for depression. This theory was eventually refuted and asthma became known as the inflammatory condition it is treated as today.'
Refuted by whom? This topic is still very much discussed in psychoanalytic circles today. It is very limiting to continue to emphasis the Cartesian split when discussing issues of sickness and health.
Please choose the reason of your report below: