The Oxford Criteria

[Andrew]

What has become known and "The Oxford Criteria" is a definition of CFS published in Journal of the Royal Society of Medicine Volume 84 February 1991 118-121. Every UK study I've read uses it, and I think I've seen other countries who work closely with UK researchers use it as well. I'm going to attach a copy, and hope that it's okay to do this. But I'm also going to summarize here what I think are the key points.

The only required symptom is fatigue that is severe, disabling, and affects physical and mental functioning." And that this goes on for 6 months etc. But no other physical maladies are required. No sore throat, post exertion problems, etc. Now, they do mention that a patient may have a mood disturbance, sleep problems, or myalgia. But not one of these is required for diagnosis. In other words, a person can have zero additional physical symptoms (beyond fatigue) and still be diagnosed with CFS.

Now, they do have a subtype of their CFS called Post-infectious fatigue syndrome (PIFS). But aside from requiring a previously identified infection, all it requires is the same kind of fatigue for 6 months, etc. as above.

The criteria also mentions comparison groups, which is a term they prefer over control groups. Suggested comparison groups are patients with neuromuscular disorder, conditions causing inactivity, and depression. You will notice that they don't suggest researchers compare ME versus their fatigue-only syndrome. Or compare people who have Fukuda. Not that they are required by law to do this, but it is interesting to see what they focus on. Or rather, what they focus away from.

So what difference does any of this make. Well, would you like to be given treatment for COPD if the treatment was based on generic coughing studies. I sure wouldn't. But this is the effect this is having on us. And what's worse is, scientists and journalists ignore that this is not the same as other definitions. So they publish articles that list things like sore throat, PEM, etc. but then cite Oxford studies that do not, while all the time ignoring the differences. And journalists do the same. Then everyone reads it and assumes they have done their due-diligence, when they have not.

 

[justinreilly]

What has become known and "The Oxford Criteria" is a definition of CFS published in Journal of the Royal Society of Medicine Volume 84 February 1991 118-121. Every UK study I've read uses it, and I think I've seen other countries who work closely with UK researchers use it as well. I'm going to attach a copy, and hope that it's okay to do this. But I'm also going to summarize here what I think are the key points.

The only required symptom is fatigue that is severe, disabling, and affects physical and mental functioning." And that this goes on for 6 months etc. But no other physical maladies are required. No sore throat, post exertion problems, etc. Now, they do mention that a patient may have a mood disturbance, sleep problems, or myalgia. But not one of these is required for diagnosis. In other words, a person can have zero additional physical symptoms (beyond fatigue) and still be diagnosed with CFS.

Now, they do have a subtype of their CFS called Post-infectious fatigue syndrome (PIFS). But aside from requiring a previously identified infection, all it requires is the same kind of fatigue for 6 months, etc. as above.

The criteria also mentions comparison groups, which is a term they prefer over control groups. Suggested comparison groups are patients with neuromuscular disorder, conditions causing inactivity, and depression. You will notice that they don't suggest researchers compare ME versus their fatigue-only syndrome. Or compare people who have Fukuda. Not that they are required by law to do this, but it is interesting to see what they focus on. Or rather, what they focus away from.

So what difference does any of this make. Well, would you like to be given treatment for COPD if the treatment was based on generic coughing studies. I sure wouldn't. But this is the effect this is having on us. And what's worse is, scientists and journalists ignore that this is not the same as other definitions. So they publish articles that list things like sore throat, PEM, etc. but then cite Oxford studies that do not, while all the time ignoring the differences. And journalists do the same. Then everyone reads it and assumes they have done their due-diligence, when they have not.

I agree, Andrew. I think stamping out the fake definitions esp. Oxford & Reeves (and getting an accurate def., the ME ICC, validated and adopted) should be our number one priority!!

 

[medfeb]

I agree, Andrew. I 'd include Fukuda in that group.

 

[Andrew]

Yes, I agree about Fukuda. My primary reason for posting this is so patients can show this to their doctors who have read the CBT and GET studies based on the Oxford Criteria.

 

[Sing]

Consumer Reports runs articles on health and has a health newsletter, occasionally covering "Chronic Fatigue Syndrome". Their information comes from their partner, the BMJ (British Medical Journal, I think it is), so, publish that the XMRV retroviral cause hypothesis has been disproven and that the only successful treatments are Cognitive Behavior Therapy and Graded Exercise Therapy. As we know, however, these are two treatments known to help depressed people, but which are for us of non-specific relevance, in the first case, and harmful in the second. I found their fall health newsletter which stated these ideas, but had no place for letters/comments. Then I went to their website, www.ConsumerReports.org and found one good reply in the comment section after one of their previous articles on CFS along the same lines.

So I would draw attention to this publication, as relying on the Oxford Criteria, apparently, and the BMJ's views. Many US citizens rely on Consumer Reports for accurate information; it has historically been a very trustworthy source not beholden to the powers-that-be. I would like to see us set them straight. Any letters or comments to Consumer Reports from us would really be helpful.

Thanks!

Sing

 

[justinreilly]

I certainly agree Sing. I will write them at some point. Can't find a comment box. do you know where it is?
http://www.consumerreports.org/heal...ments/chronic-fatigue-syndrome/what-is-it.htm

 

[Andrew]

I searched the consumer report website and I can't find the consumer report that recommends CBT and GET.

 

[Sing]

Andrew, I found a comment section in an earlier article on CFS which I got to when I typed in Chronic Fatigue Syndrome in the search box, but today when I was starting from your link, then going to the Customer Service section, then to how they do their ratings, etc., I didn't see a place to comment either. There must be somewhere to send them feedback, though it seems as though they are locked in with BMJ for their health news.

So, ????

Sing

 

[Andrew]

If for some reason you don't like the PDF, here's a link to a different copy: http://www.theoneclickgroup.co.uk/documents/ME-CFS_res/CFS Oxford Criteria 1991.pdf

 

[Andrew]

As a member, I was able to find access to consumer reports via their member interface. So I sent a comment.

 

[justinreilly]

I searched the consumer report website and I can't find the consumer report that recommends CBT and GET.

Consumer reports says CBT and GET are the only recommended treatments for "CFS".

Benefits very likely outweigh harms:

Cognitive behavioral therapy
Graded aerobic exercise

http://www.consumerreports.org/heal...ic-fatigue-syndrome/treatments/what-works.htm
http://www.consumerreports.org/heal...ndrome/treatments/graded-aerobic-exercise.htm

 

[Andrew]

I wish I had point them to those links. Anyway, I already called this to their attention, and they have my email address if they have questions.

FWIW, here's what I sent them:

My comment is on the resources you use for information about chronic fatigue syndrome. Particularly information about treatment found at this page: http://www.consumerreports.org/heal...ments/chronic-fatigue-syndrome/what-is-it.htm. You use sources of information in the U.K. There, they use the Oxford Criteria to define chronic fatigue syndrome. These criteria defines a different syndrome that only requires physical and mental fatigue. No sore throat, no tender lymph nodes, no post exertion malaise, etc. Using information from these studies to evaluate CFS treatment is like using generic coughing studies to evaluate asthma treatment. It is bad science.

If you would like to confirm this, heres a link to the Oxford Criteria: http://www.theoneclickgroup.co.uk/documents/ME-CFS_res/CFS Oxford Criteria 1991.pdf

Heres the CDC definition: http://www.cdc.gov/cfs/general/case_definition/index.html.

As you can see, the UK definition is little more than idiopathic chronic fatigue.

I wont get into the U.K. politics that brought this about. But their research that claims to be about chronic fatigue syndrome is not legitimate. And unfortunately, many who are involved in world health turn a blind eye to what the U.K. does.

As a consumer organization, I think your customers would be better served if you pointed all of this out to them, and stopped posting information that comes from Oxford Criteria studies.

Anyway, I wish now I had pointed them to the ICC. At the time I wrote this I thought it would complicate things too much, and was not necessary to discredit the Oxford studies. Now I'm not so sure.