your thoughts on Hummingbird foundations view on splitting ME and CFS

[slysaint]

I was recently incensed to find that on my medical records my diagnosis of ME (2001) and subsequent 14 years with the illness has been reduced to a one line saying Chronic fatigue syndrome. I really object to the CFS tag.
A while back I came across the hummingbird foundations site but today I gave it a deeper read. I agree with a lot of what they have to say and was intrigued with their explanation of the origins of the use of "CFS".
Elsewhere I found that the question of separating ME and CFS as different illnesses had been raised in the Commons in 2011.
I want to get my current medical records summary (created by the surgery I've recently joined) changed.

 

[Valentijn]

I think they might get overly fixated on that issue, and become a bit strident about it.

There are other issues of far greater importance.

 

[Dolphin]

I think they might get overly fixated on that issue, and become a bit strident about it.

There are other issues of far greater importance.

I haven't looked in to it for a while. But last time I looked, they seemed to be very focused on claims by Byron Hyde. I know somebody who attended him as a patient and things weren't as straightforward as he made out. For example, despite all his claims that SPECT scans are easy to read, he couldn't do this himself.

Maybe he has found interesting things but I think he should publish them in peer-reviewed medical journals. Talks to patient groups have no status in the medical world. Also, when papers are published one can see how rigorously done the research was. People pay to see him through a research foundation so think they should have published more in the last twenty or so years.

I'm not sure whether his thyroid cancer finding would stand up to scrutiny. I know with the prostate, when dead people are assessed, lots of people are found to have prostate cancer but for only a percentage, did it affect their life. I think it is quite likely to be the same thing with thyroid cancer i.e. if you test, you will find it. Thyroid cancer also has a very good prognosis.

 

[caledonia]

You could possibly do so if you're in the US - the new ICD-10-CM medical codes now have a code for myalgic encephalomyelitis G93.3, in the neurological chapter. ME is listed as mutually exclusive from CFS.

I recently saw someone's medical records where the doctor used both the ME and the CFS codes for billing (even thought technically they're mutually exclusive).

There is a movement to make ME and CFS separate in the US. The recent IOM report identifies a disease with post exertional malaise and recommends not using the term CFS. They stop short of calling it ME and instead suggest the same SEID.

The Chronic Fatigue Syndrome Advisory Committee just put out recommendations that separate ME from CFS. They voted down using SEID, but were unable to get the name ME voted in. There is supposed to be a name change workshop to work on that further.

The advocacy group I'm involved with, is also working for the separation of ME and CFS. Other groups may be doing the same.

So, it's kind of a mess right now and nothing is definitely decided.

The only thing I would worry about, is if you get your diagnosis changed to ME and you were approved for disability under CFS, would that somehow mess up your disability. Social Security does have rules for approving CFS and they do mention myalgic encephalomyelitis as a subset of CFS, so maybe it's ok.

https://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

 

[Sea]

Hummingbirds makes various claims as though they are fact without showing any evidence. The site is not an authority that can be used.

 

[halcyon]

I agree with their view. Without getting political about it, it's pretty sensible. The case definitions for ME and CFS don't match up. The CDC agrees with this. The IOM agrees with this. Preliminary research agrees with this. It really shouldn't be controversial. ME being separated from CFS doesn't suddenly invalidate CFS. The bottom line is that, whether you meet the ME or CFS criteria, we're all sick and we deserve high quality scientific research done on us. Without a biomarker we'll never be able to say for sure what's ME and what isn't.

 

[leela]

Hummingbirds makes various claims as though they are fact without showing any evidence. The site is not an authority that can be used.

Are you talking about Jodi Basset's site? Because she is very thorough with the references iirc.

 

[Sean]

I generally use the ME/CFS name. But I honestly don't know the answer to this question, because I don't think we have enough good info to give us a reliable answer.

I do think there is little doubt that the broader, less rigorous, more inclusive definitions (especially the Oxford, but probably also any that do not include PEM as a mandatory feature,) have contaminated patient selection. But how much so is a lot less clear, and until we have some good biomarkers, especially for PEM, then we are not going to have good answers.

Answers that can only come from more high quality research!

 

[Snow Leopard]

Both CFS and ME are a mess.

Nothing will be settled until we move beyond both of these names...

 

[heapsreal]

Both CFS and ME are a mess.

Nothing will be settled until we move beyond both of these names...

Biomarkers are required.

 

[WillowJ]

I would prefer spend my energy to get everyone stop using the name and various diagnostic criteria for CFS than fight to make it exist (as a myth) separately. Just because there is a bad definition that exists, doesn't mean this matches some real clinical entity.

There is the neuro-immune disease (or spectrum of diseases) that we have, and there is idiopathic/undiagnosed chronic fatigue.

Neither of these are properly CFS. So just stop using CFS (name and various diagnostic criteria). Pretty sure at least 95% of us can agree on that.

 

[A.B.]

We need biomarkers to separate subgroups. Intuition isn't sufficient.

 

[slysaint]

Thanks all. As I mentioned I was originally diagnosed with ME(2001). This diagnosis continued until last year when I changed practice. They clearly prefer to call it CFS. I think I have enough now to argue it should be put back to ME (all benefits forms, medical reports have M.E . on them).
There was a time when fibromyalgia was included under the ME umbrella, but they seem to have gained "Independence" and are regarded with less scepticism even though many of the symptoms overlap. This ignorance about all the other symptoms of ME (other than the fatigue bit) that seems to persist is what I find incredibly frustrating.

 

[Sea]

Are you talking about Jodi Basset's site? Because she is very thorough with the references iirc.

Yes she has many references. References are not the same as evidence. I am not entering into any debate about whether her information is true or not, just whether it is an authority that can be used (as in the OP's request)

 

[Kyla]

Leonard Jason proposed something similar in this blog:
http://blog.oup.com/2015/09/patients-battle-for-justice/

Basically splitting it into 3:
ME, SEID and a third category basically for unexplained chronic fatigue.

 

[slysaint]

Had a look on the NHS website under chronic fatigue syndrome/me where they try to explain away the different names(SEID gets a mention). Apparently M.E. is the 'lay mans' term (!!), and too restrictive a definition(!).
I was going to write about how much more accurate and 'medical' 'Chronic fatigue syndrome' is but I don't know the emoticon for sarcastic.
Anyway it's clearly too long for GPs as in my medical notes in correspondence, I'm referred to as a ' chronic fatigue sufferer'.

 

[redaxe]

Honestly I think this is about 20 years too late. I hate the term CFS as much as any of us - but to be honest I think we're stuck with it - basically nearly every person, website and institution etc uses CFS as part of the ME/CFS terminology.
For example Dr Lerners website, Stanford University, etc....

I don't think the SEID term is really sticking with people (I don't see people on these forums calling it SEID routinely) everyone writes ME/CFS. Until we find some real biomarkers and what the underlying disease is I doubt much will change.

 

[A.B.]

SEID isn't used much because the case definition it's tied to isn't currently used.

 

[jadam914]

I am not thrilled with name CFS. ME sounds better and I think it's description may fit better for me. We need bio markers to sort all this out. Till then we are all stuck in the desert together.

All I care about is the dysfunctional medical science community as a whole finally doing something for us.