CFS Patients War Against Controversial U.S. Health Research Plan

[leela]

http://www.amazon.com/Penny-Swift/e/B000APETMU

Her blurb.

ETA: Another blurb:
http://guardianlv.com/author/penny-s/

 

[beaker]

I know Penny made a few errors -- ok more than a few- but she is trying. Heck, I know a lot of patients that know less than she does. Sadly, way too many. She seems to want to be helpful. That's a good thing to me. Why not guide her along, with relevant links, a copy of Osler's web and so forth ? We can use all the help we can get.

 

[Firestormm]

You said someone needs to take control and bring in something to replace them all. No one seems to have that power. And if they did, what if they just adopted something poor like Oxford for NICE?

Personally, I quite like the NICE definition as it happens - not all of NICE - but the definition was a reasonable compromise at the time I felt, a time when we had nothing, and no doctor had any guidance at a national level.

You sure it is 'Oxford'? I didn't know that. I know they reviewed existing definitions at the time including CCC, and favoured if anything the Australian definition. But I've talked about this quite a lot on several threads. See full NICE Guideline Chapter 5.

NICE was never empirically tested either of course, which it should have been in my view. Of course the haggling begins really - when you get to the exclusionary tests. Something again that we haven't really considered in any presentation or engagement.

It's hard for me to determine what the extent of the IOM review will be. Clearly they are not seeking to replicate NICE to its' full extent, as their remit is not to cover so-called 'treatments', but will they be seeking to explain other things as NICE tries to do?

I can't help but wonder at the number of people who will meet a so-called 'ME' pure definition. And whether there will be anyone left with 'CFS'. I rather myself like the 'spectrum' idea that has been advanced.

Breaking apart the 'two diseases' may also be tricky when relating them to severities and the fluctuating nature of the illness. Will I be 'CFS' today, and 'ME' tomorrow - based only on symptom definitions and tick-boxes?

What would that mean for any 'treatment' or management plan?

I find it all rather silly at the end of the day. It will be the same people involved in clinical care. And until such time as a biomarker or markers can be determined - what difference does all of this 'talk' make?

People hope that if they are determined by some symptom based definition to have 'ME' it will mean they have an 'organic' disease and those unfortunates 'left' with CFS will be at the mercy of the 'shrinks'.

It will not work like that. Not a chance. Not now. The opposition from 'experts' - the clinicians - has a lot to do with wanting to retain control and be able to apply their clinical judgement and expertise I think.

Because I do wonder at how rigidly those who signed the letter in support of CCC actually follow it verbatim when diagnosing patients. I do not believe it to be as rigidly applied in practice as some patients might like to think.

I also think patients should be grateful to HHS because until this process began - the experts had not united around anything in such a way before.

If they had gotten together round a table to thrash out a definition - do you think it would be the CCC that emerged at the end of the process? Because I don't think it would. I think it would have been adapted.

Reading some of the comments left against articles or blogs surround IOM controversy, it is also clear to me that not everyone understands that they are looking at a clinical and not research definition or that IOM is not tasked with looking at or recommending 'treatments'.

I do wonder as well at the extent to which people are also aware of what the CCC comprises - and how much the opposition to IOM is based purely on the feeling that 'our experts know best'.

Of course as I said, some of those experts are on the IOM panel and thank the gods for that. That is unless they resign as was asked of them by several making the presentations. I have to then wonder where we would be.

It's not to me as black and white as some are trying to portray it. As was said in the article, the earth is not flat, either; but perhaps not in the way that they meant.

I picked up on this from the article above, also:

The letter pointed out that CCC incorporates “extensive scientific knowledge” that has been gleaned from many years of research. It has also been endorsed by the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME), the leading professional organization dealing with research in both ME/CFS and international patient care.

Fascinating then, that Lily Chu is a Board Member of IACFS/ME is on the IOM panel isn't it? And, again, I would like to think the 'community' would be grateful to her for stepping up to the 'hot' plate on our behalf:

ME/CFS Experts* (7 of 15)

• Dr. Lucinda Bateman
• Dr. Lily Chu
• Dr. Betsy Keller
• Dr. Nancy Klimas
• Dr. Martin Lerner
• Dr. Benjamin Natelson
• Dr. Peter Rowe

http://www.occupycfs.com/2013/12/03/iom-panel-announced/

The words of IACFS/ME President Dr Fred Friedburg recently:

Since your organization approved of the IOM study to re-define ME/CFS, how do you feel their study will improve on the Primer produced by the IACFS/ME?

IACFS/ME did not formally endorse the IOM effort to recommend a case definition for CFS/ME, although I expressed hope for a good outcome in my presidential letter to the membership.

When we have the IOM report, then we can discuss how it might affect the Primer.

http://phoenixrising.me/archives/21738?preview_id=21738

So, while it may be true that IACFS/ME endorsed the CCC, that comment doesn't really tell the full story does it?

 

[Ember]

Why not guide her along, with relevant links, a copy of Osler's web and so forth ?

Wally has done just that, posting these references on mecfs forums:

I would like to suggest, if you have not already done so, that you review a number of articles written by David Tuller about ME/CFS.
(See, http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome and a long list of his ME/CFS articles* is referenced at the very end of this post.)
Mr. Tuller cut his teeth in "traditional" journalism many years ago. He was a reporter and editor at the San Francisco Chronicle, health editor for Salon.com, reporter with the New York Times, and now he is a lecturer at U.C. Berkeley’s Graduate School of Journalism, as well as continuing to write as a freelance journalist for a number of publications. Perhaps after reviewing the quality of journalism Mr. Tuller has brought to this subject matter, the criticism related to the lack of a comprehensive review of sources, used for your article will become more apparent.

Another journalist that I recommend taking a look at his work on ME/CFS is Llewelynn King (a journalist who spent over 46 years based in Washington D.C. and hosts the news show the “White House Chronicles”, which can be found at http://www.whchronicle.com/. The “White House Chronicles” is a weekly news and public affairs program, airing nationwide on PBS, public access cable and commercial television channels.” He has also reported extensively about this illness on his MECFS Alert Channel and I have referenced some of his work with MECFS Alert below and I have suggested a number of episodes for your review if you are unable to review all the episodes that he has published. He most recently was involved in a press conference about ME/CFS, in Washington D.C., at the National Press Club. A link to the Press Conference is included in a list of videos included below, but for ease of access I am also linking it here -

. See also, http://www.youtube.com/user/MECFSAlert.

As you may now be realizing (perhaps especially after receiving a “Baptism by Fire”) the world of ME/CFS is not an easy area to traverse for either patients, medical professionals or journalists. However, if your purpose is to report on this illness as fairly and objectively as possible, then I think you will find that you would be welcome to hang around and learn the ropes about this illness. However, if you do not do your homework, you will probably find that the online patient community, found on this Forum and elsewhere, will not sit quietly on the sidelines and allow your words to go unchallenged.

This is an illness that conservatively affects seventeen (17) million people worldwide (including many patients in South Africa). That number equals thirty-four (34) million ears and eyes, not counting patients family members, friends and other supporters. Misinformation about this illness has been happening for many years with a downhill trajectory, especially since the 1980’s when there were reported cluster outbreaks of this illness in Incline Village, Nevada and Lyndonville, New York. Thirty (30) years is a long time to be fighting to get factual and comprehensive reporting of this illness out to the world. Please be very, very mindful of the responsibility you have as a writer to report any story about this illness as accurately as you possibly can.

You may also want to read (what I personally believe is one of the most comprehensive pieces of investigative journalism ever done on this illness) “Osler’s Web” by Hillary Johnson. Ms. Johnson, like Mr. Tuller, was also an accomplished journalist before embarking on writing about this illness. Unfortunately, Ms. Johnson no longer has a website available on line, but she does continue to have a presence on-line through her Twitter account (https://twitter.com/oslersweb) and her book “Osler’s Web” is still available to purchase (see, http://www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/051770353X). If you are interested, I would be happy to purchase a copy of her book for you to read.

An editorial written by Erica Verrillo (http://www.ericaverrillo.com/) about the IOM/HHS Contract provides a very comprehensive list of references/sources for the information she discusses in this article. See, http://www.prohealth.com/library/showarticle.cfm?libid=18457 and you will find additional information on her blog “Onward Through the Fog” that can be found at http://cfstreatment.blogspot.com/.

The following patients and/or patient advocates also have blogs with a lot of information about ME/CFS. 1) Jeannette Burmeister who writes a blog called “Thoughts About Me” at http://thoughtsaboutme.com/, 2) Jennie Spotilla who writes a blog called “Occupy CFS” at http://www.occupycfs.com/ and, 3) Mindy Kitei who writes a blog called “CFS Central “ at http://www.cfscentral.com/.

There are also numerous videos available on-line that you could watch to learn about ME/CFS and the stories behind the illness. Prior, to writing a follow-up article or talking to the “sources” that you listed in your current article, here is a list of videos that I would highly recommend you watch.

1) Press Conference held in Washington D.C. at the National Press Conference on 1/24/2014 -

and see also, Llewellyn King’s article at http://www.whchronicle.com/2013/12/david-and-goliath-or-the-sick-and-the-bureaucracy/ and also published in the Las Vegas Sun and other papers in the U.S.

2) White House Chronicles News Segment with Mary Dimmock at http://www.whchronicle.com/2014/01/chronic-fatigue-syndrome-and-the-crisis-in-biomedical-research/

3) MECFS Alert – (Episodes 1 – 53, with your attention directed to Episodes 1, 2, 8 and 9, 22 thru 23 (multiple parts), 26, 38 thru 41, 50, 52, 53, 54)

-Episode 1 (Parts I -2) - Part 1:

, Part 2:

-Episode 2 –

-Episode 8 – http://youtu.be/DtIvyKkFCHw
-Episode 9 – http://youtu.be/9VCQPFopbWs
-Episode 22 (Parts 1 -3) – Part 1: http://youtu.be/pbvmLXiZJ9w, Part 2: http://youtu.be/GYaSNgbjs8E, Part 3: http://youtu.be/FgHQf6_FH8Y ,
-Episode 23 (Parts 1 – 3) – Part 1: http://youtu.be/Dt8hKslAVk8 , Part 2: http://youtu.be/f3uvZurXSZU, Part 3: http://youtu.be/PKAIdbOzcvg
-Episode 26 - http://youtu.be/bptxtz6zbvg
-Episode 38 - http://youtu.be/NhU-G0loqtY
-Episode 39 – http://youtu.be/I44G-tGgLNE
-Episode 40 - http://youtu.be/A1h0elEhSO0
-Episode 41 - http://youtu.be/QGRwyrnuDLs
-Episode 50 - http://youtu.be/Sdoj53qM97c
-Episode 52 - http://youtu.be/CkY80jNw1qo
-Episode 53 - http://youtu.be/TdUd24CXflc
-Episode 54 - http://youtu.be/qPMq46Rb0G8

4) ME/CFS Documentary - “The Blue Ribbon: A ME and CFS Documentary Project”. This documentary is currently in production. Here are two trailers for this documentary at http://youtu.be/VSLHT88o0IQ and http://youtu.be/y69PqwZoUws . This is the Facebook page for this documentary - https://www.facebook.com/CFSDocumentary?ft . Website for this documentary - http://mecfsdocumentary.com/.

5) ME/CFS Documentary - “A Canary In A Coal Mine”. This documentary is currently in production. See the trailer and Kickstarter Appeal for this documentary at http://youtu.be/YNZai25bOjQ . This is the Facebook page for this documentary - https://www.facebook.com/canaryfilm.

6) ME/CFS Demonstration in S.F. on 12/9/2013 - http://youtu.be/AyHEyAKKvHk and ME/CFS Demonstration and Advocacy Action in Washington D.C. on 12/10/2013 and 12/11/2013 - http://youtu.be/F65I1DSXcFY .

7) CFSAC Meeting of 12/11/2013 (written testimony) at http://www.hhs.gov/advcomcfs/meetings/presentations/12112013.html and (pre-recorded testimony) available at http://youtu.be/7CqppW1eMhc. Unfortunately the U.S. Health and Human Services Department (HHS) has not yet made available the full video recording from this meeting. When it is released, it should be posted at this location http://www.hhs.gov/advcomcfs/meetings/index.html.

HHS/IOM Meeting on January 27, 2014 (Public Portion of the Meeting) located at http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-JAN-27/Videos/Session Background/1-Process-Video.aspx (note there are five (5) sections to the videos posted at this link).

9) ME/CFS Documentary produced by Kim Synder in 2000 which is now available on YouTube in full length (with a running time of 1 hour and 12 minutes) at http://youtu.be/401--WCB5dc or divided into nine (9) parts (with a running time of approximately 9 minutes each). See also, http://en.wikipedia.org/wiki/I_Remember_Me .

Part 1 – http://youtu.be/OsGS3hcpMX4
Part 2 – http://youtu.be/oZhh3rH3GYM
Part 3 - http://youtu.be/q1RnBvWuzds
Part 4 – http://youtu.be/McTpKomXxHw
Part 5 – http://youtu.be/ZLfKHp9MJTc
Part 6 – http://youtu.be/Kf5GNr99BbQ
Part 7 – http://youtu.be/rnHeQYHliTY
Part 8 – http://youtu.be/hgQMcYAcXpI
Part 9 - http://youtu.be/AT7YYjmi4zA

10) ME/CFS Presentation by Dr. Andreas Kogelnik in Mt. View, California in 2011 at http://www.elcaminohospital.org/Abo...Videos/Lunch_n_Learn_Chronic_Fatigue_Syndrome . (See, http://openmedicineinstitute.org/.)

11) ME/CFS Presentation by Dr. Jose Montoya at Stanford University in 2011 at http://youtu.be/Riybtt6SChU . (See, http://chronicfatigue.stanford.edu/ and http://chronicfatigue.stanford.edu/documents/2014StanfordME_CFSSymposiumBrochurefinal.pdf .)

12) ME/CFS Presentation by Dr. Daniel Peterson at http://www.youtube.com/watch?v=pyHo9-ShkXI and http://www.youtube.com/watch?v=L63TpHaskhU and http://youtu.be/d86dNggUVRI and http://youtu.be/3VkTLKBGo8Y . (See, http://simmaronresearch.org/saboard/dpeterson.html .)

13) ME/CFS Presentation by Dr. Ian Lipkin at http://imedia.unr.edu/unsom/whittemore_peterson_institute/dr_ian_lipkin.html . (See, http://www.mailman.columbia.edu/our-faculty/profile?uni=wil2001 and http://www.mailman.columbia.edu/new...ity-will-investigate-chronic-fatigue-syndrome and http://cfinitiative.org/about-the-initiative/ and http://cfinitiative.org/lead-researchers/ .)

14) Primetime Live (news Program produced in the U.S. – circa 1996) - http://youtu.be/AW0x9_Q8qbo (See, http://en.wikipedia.org/wiki/Primetime_(TV_series) .)

While I am not a journalist and I suffer from cognitive deficits as a result of this illness (especially when trying to write), as a former attorney in the public sector, I believe that anyone writing about subject matter that touches upon the central theme of ME/CFS must do a thorough review of literature and film, in order to avoid creating more harm to an already trivialized, maligned, and marginalized group of patients and their families.

I hope the time and considerable effort I have put into collecting the resources identified above will be of help to you and others to both learn about this illness and to report about this illness as accurately as possible.

Sincerely,

Susan Kreutzer (also known on-line by the name “Wally”)

P.S. My comment to your article was posted on the evening of 2/5/2014 at approximately 11:00 pm (PST), but has not yet appeared in the comment section for your article. If you review the blog post written by Jeannette Burmeister (http://thoughtsaboutme.com/2014/02/02/who-is-causing-facebook-to-block-tullers-article/#comments) , this may also help you understand why there are heightened concerns with the failure of particular comments to show up in the Guardian Liberty Voice (“G.L.V.”) publication. Whether this was just a technical glitch with GLV’s software program is no yet known, but as the writer of this article, I would hope that you and the publisher of the GLV, would investigate this further to try and determine what was causing certain comments not to be posted.
___________________________________________________________________
*Additional articles about ME/CFS written by journalist David Tuller.

1) http://www.nytimes.com/2012/02/07/h...tion-is-far-and-wide.html?pagewanted=all&_r=0 and
2) http://www.theopennotebook.com/2012/01/18/david-tuller-cfs/ and
3) http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ and
4) http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1 and
5) http://www.nytimes.com/2011/03/08/health/research/08fatigue.html and
6) http://www.nytimes.com/2011/02/18/health/research/18fatigue.html and
7) http://www.twiv.tv/2011/02/06/twiv-119-science-and-journalism-with-david-tuller/

http://www.nytimes.com/2011/01/04/health/04fatigue.html and
9) http://query.nytimes.com/gst/fullpage.html?res=9C00E4DB1439F937A1575BC0A9669D8B63 and
10) http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-expert.html and
11) http://www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-questions.html and
12) http://www.nytimes.com/2007/07/17/science/17fatigue.html.)

[Permission to re-post this post in whole or part is granted by the author.]

[Edit - Please note that it is the software program on this site that appears to be turning the number eight (

with a parenthesis after it into a "cool smiley face with sunglasses". While I do really like the "dude" in the sunglasses, he has apparently decided to step into my post whenever I have use the number eight (

with one parenthesis after it. I guess with the malware attack currently going on over at the Guardian Liberty Voice that my little smiley sunglass dude seems like a small price to pay to still be able to access this site.

]

 

[leela]

I'm so grateful to Wally. This is so great for all of us to have on hand.

 

[Firestormm]

@biophile There is another interesting point, talking about the NICE Guideline, and that is, is it really a definition at all? There has been some recent discussion about this elsewhere, and I think it centres around the simple fact that it was never published as a paper. So, does it constitute a definition in the true sense? If not, and if the IOM are seeking to issue their own recommendations, and let's say that HHS endorse them: will they also actually be a definition in the true sense - or clinical guidelines? Not that I suppose it makes much difference really. It's never been mentioned though on here before.

 

[beaker]

Wally has done just that, posting these references on mecfs forums:

@Wally Thank you !!! Fantastic.

 

[biophile]

@Firestormm. When I said "what if they just adopted something poor like Oxford for NICE" I meant Oxford or NICE. I did not mean to imply that NICE was based on Oxford. The NICE criteria is chronic fatigue with PEM/PEF and at least one additional symptom. I do not think brief or vague descriptions of PEM/PEF are good enough. The Canadian criteria, although technically only requires some vague PEM/PEF, has a rich description of post-exertional symptomatology that resonates with patients and is far superior to any CFS definition before/since. The ICC-ME attempted to build on that.

There might be lack of empirical testing of the definitions, but there has been some work on defining symptoms of CFS.

For example, the work of Jason et al (repeatedly?) suggests that multidimensional fatigue, post-exertional symptomatology and neurocognitive impairments are key symptom categories. Furthermore, patients experience "several different types of fatigue including postexertional fatigue, wired fatigue, brain fog, energy fatigue and flu-like fatigue compared to the healthy group which only experienced just an overall, general type of fatigue".

They found that post-exertional symptomatology is accurately exampled as: "Dead, heavy feeling that occurs quickly after starting to exercise; Next day soreness or fatigue after non-strenuous, everyday activities; Mentally tired after the slightest effort; Physically drained or sick after mild activity; and, Minimum exercise makes you physically tired." (etc)

"Our research group feels that post-exertional malaise is a cardinal feature of ME; the definition recognizes post-exertional malaise as prolonged restoration of muscle power following either mental or physical exertion."

They also discovered that when patients report symptoms of post-exertional malaise, those symptoms are independent of emotional distress, but when the general population report what they think are post-exertional malaise symptoms, their symptoms of post-exertional malaise are significantly related to emotional distress.

The Jason et al revision of the CCC even allowed patients to be diagnosed without chronic fatigue.

I have not conducted a systematic review of all the literature and am unlikely to ever do so, but surely any attempt at creating a new definition should take into serious consideration research such as that I described above? If the IOM contract come up with another vague poorly worded criteria, then I will suspect they were sleeping at the wheel. If a definition is going to be symptom based, then those symptoms better be richly and accurately described.

As a personal anecdote, when I first read the CCC, I was impressed with the rich descriptions of symptoms. It resonated with me in a way that no vaguely worded CDC/Oxford definition ever did. It was the first time I felt that the authors of a definition actually knew what they were talking about when describing my symptoms. It made me reconsider that "CFS" (I did not know much or anything about ME at the time) may not be some bullshit wastebasket diagnosis afterall but an actual entity. I know the CCC criteria itself is far from perfect and needs to be refined, but still.

Many patients felt the way I did about the CCC or ICC or Ramsay descriptions etc. Who ever felt the same way when they first read the CDC/Oxford/NICE definitions and were not instead left with a sense of ambiguity and vaguenesses? So yeah, I think immediately adopting CCC or similar would be an improvement over the current situation.

Back to the experts, good point about the "ME/CFS" experts may not be so black and white on their opinions and actions. They are still outnumbered by non-experts, right? Would be amusing if they walked out and refused to sign it just as White et al did when they walked out of the CMO report for disagreeing with the endorsement of pacing or whatever?

 

[Firestormm]

Latest from Penny Swift (bit of a sensationalist headline): Fibromyalgia and ME/CFS Labeled Mental and Behavioral Disorders by WHO

 

[biophile]

Doesn't seem that sensationalist if BDS is replacing ME/CFS, and BDS is listed under "Mental and behavioral disorders".

BDS i.e. bodily distress disorder, taking over a bunch of diagnoses = "one ring to rule them all".

 

[leela]

Well, let's say it's inaccurate, rather than sensationalist, because
1) it has not as yet been relabeled
2) either way it should read "mislabeled" to clarify the erroneousness of the proposed classification

 

[Firestormm]

My comment from the other thread about the latest article: http://forums.phoenixrising.me/inde...e-under-nervous-system-dis.28171/#post-429334

Towards the end of January, ICD Revision confirmed a decision to postpone presentation of ICD-11 for World Health Assembly approval by a further two years, from May 2015 to May 2017, to allow more time for development and field studies: http://wp.me/pKrrB-3H9

http://wp.me/pKrrB-3H9
If anyone ever wants to stay up to date with these developments then there is frankly no one better informed in my view than @Dx Revision Watch and Suzy Chapman.

You can read the update from her (8 February 2014) here: http://dxrevisionwatch.com/2014/02/...93-3-categories-within-the-icd-11-beta-draft/

One of our often unsung heroes in my book

 

[alex3619]

Doesn't seem that sensationalist if BDO is replacing ME/CFS, and BDO is listed under "Mental and behavioral disorders".

BDO i.e. bodily distress disorder, taking over a bunch of diagnoses = "one ring to rule them all".

But is this the ring around Ur-anus?

BDO is claimed to be superior because it covers just about every disease that is not nailed down. Its the quintessential wastebasket diagnosis.

 

[leela]

Why don't they just go ahead and make one ICD Dx for all diseases everywhere:
BOSP Bugger Off, Sick Person

 

[Firestormm]

Can anyone tell me, in summary, what actual difference it makes if the WHO change its' classification index? In terms of research, diagnosis and treatment. I mean it has made bugger-all difference having benign Myalgic Encephalomyelitis under diseases of the nervous system and hence neurological - has it? Absolutely none whatsoever. Thanks.

 

[Bob]

Can anyone tell me, in summary, what actual difference it makes if the WHO change its' classification index? In terms of research, diagnosis and treatment. I mean it has made bugger-all difference having benign Myalgic Encephalomyelitis under diseases of the nervous system and hence neurological - has it? Absolutely none whatsoever. Thanks.

I think the major difference may be for private medical insurance claims, esp in the USA. If CFS is categorised as somatoform/psychological, then the insurance industry may save billions. (My undesrtandign is that private medical insurance tends to have substantially lower limits for claims for psychological/psychiatric illnesses than for 'medical' issues.) (But I don't know a great deal about the legal technicalities of medical insurance, and someone else may know more about it.)

Also, of course, it's one extra weapon that the cognitive-behavioural lobbyists will have to beat us with.

 

[biophile]

@alex3619 . The BDS "ring" may not be around Ur-anus or My-anus, but it is certainly around Sum-anus!

@Firestormm . Good question. Having ME listed under diseases of the nervous system in the ICD appears to have done little. However I imagine things would get worse if ME was dropped entirely and replaced with BDS. The ME listing has important historical value, and perhaps its true value will be reinstated when more recent science justifies its ongoing inclusion there?

@Bob . Good point. The listing may have widespread consequences for the (denial or limiting of) insurance payouts. And yes, all historical and scientific issues aside, a (mis)classification would be a moral defeat of sorts.

@leela . "BOSP Bugger Off, Sick Person" ... also known as GTFO therapy!

 

[WillowJ]

Can anyone tell me, in summary, what actual difference it makes if the WHO change its' classification index? In terms of research, diagnosis and treatment. I mean it has made bugger-all difference having benign Myalgic Encephalomyelitis under diseases of the nervous system and hence neurological - has it? Absolutely none whatsoever. Thanks.

Specifically: The treatment for bodily distress disorder is CBT to persuade the patient they are not sick (not coping help, but rather the LP/"you should think of yourself as well [and not bother your doctor or spend any money on wellness]" variety), and basically putting an "IGNORE" stamp on the patient's chart: limit doctor visits, no urgent visits, and no more tests (it says limit, but as tests are difficult in some areas anyway, and the ones recommended for ME/CFS are few in any case, it seems like if you reduce limited, you get none).

So if you're one of the many people misdiagnosed with CFS who really has multiple sclerosis or a rare disease or cancer or something like that, you're out of luck. If you have ME and concurrent asthma, you're out of luck. Etc.



Generally speaking, placement in the classification index sends a message to doctors about what kind of disease it is though to be.

For instance, if it's thought to be a psychological disease, debility will be expected but not much physical debility. Thus a patient with physical debility will be confusing to the doctor: generally they will either think the patient doesn't have ME (leaving the patient without any diagnosis, which is unhelpful), or they will think the patient is exaggerating or making up the physical debility, which degrades the working relationship between doctor and patient.

If it's thought to be a somatoform disease, the patient will be thought to be experiencing symptoms without any basis in biology (as these are here thought to stem from emotion and/or lack of social support, etc., though this cannot be demonstrated). So anything treatable like asthma, UTI, orthostatic intolerance, etc., can be totally missed/ignored.

If it's thought to be a vague disease or unclassifed symptom (as US has CFS classified currently), the doctor may think anything they like, including either of the above, some combination thereof, or that there is a yet-to-be-diagnosed cause. Or rarely, that it's a neglected disease still left in this limbo code, or that not much is known about it.

If it's classified in a major medical code like neurology, it's thought that doctors would expect more physical debility and pay more attention to the specifics of diagnosis rather than some of them using it as a wastebasket code or a "secret" code for disliked patients (they use fibro for this, too).

ETA: But as @biophile said, maybe not. That idea comes from US, where we don't have a neurological classification. /edit



That was diagnosis and treatment, but research would be similar, as interest in research, funding, and approval of grants by reviewers relates to what researchers think the disease is and so what would be valuable to do (e.g. if it is somatoform or can be cured with GET, there is no use studying B cells, so that funding application would be denied, and no one with a strong science background would want to work in the field).

ETA: at any rate, BDD would be worse than the current situation! /edit

 

[In Vitro Infidelium]

Can anyone tell me, in summary, what actual difference it makes if the WHO change its' classification index? In terms of research, diagnosis and treatment. I mean it has made bugger-all difference having benign Myalgic Encephalomyelitis under diseases of the nervous system and hence neurological - has it? Absolutely none whatsoever. Thanks.

Firstly - echo praise for Susie Chapman whose work on maintaining a watching brief on the ICD and DSM processes has been immensely valuable and her decision (which no one could begrudge her) to withdraw from activism in that area, is undoubtedly a loss.

Secondly - ICD is: a CLASSIFICATION SYSTEM ! it is not a diagnostic manual, it is not a list of case definitions, it is not ICD-10CM or any other national ‘Clinical Modification’. The purpose of the ICD is to allow common reporting of ill health by all the WHO member organisations, it is primarily an epidemiological tool and because so little epidemiological work has been carried out on M.E/CFS/PVMS etc, the WHO coding has to date had very little impact on M.E research. What seems to have happened with citizen journalist Penny Swift’s article is that it regurgitates as definitive, a position adopted by some M.E advocates that the ICD classification of M.E as ‘neurological’ was a unchallengable rebuttal of the psychosocial model of the illness. The axiom ‘never believe your own propaganda’ seems pertinent.

Having M.E/CFS/PVMS etc lumped into an ICD class along with or headed by, BDS would certainly not be a happy position, but it would not impact the clinical situation directly. For nations that use a ‘Clinical Modification’ as part of their health care delivery system, the impact of any change to the ICD would be filtered through each national Clinical Modification process.

The concern that Susie Chapman has most recently raised is that there is no one in the ICD process who is willing to publicly engage over the issues affecting M.E/CFS. Certainly this needs action*, however as publication has been put back until 2017 there remains the opportunity to influence the consultation process. It would seem that given the timing, to be highly likely that the IOM process will influence the ICD outcome and would certainly affect any US ICD-CM rewrite. The IOM offers a point of influence for patients, that the ICD lacks, and for the US specifically the IOM offers a stronger position of influence than will an eventual ICD-CM rewrite where health providers (HMOs etc) will have a large say.

Realistically, holding onto neurology as the sole ICD class for M.E/CFS, in the face of expanding research which implicates a range pathologies, is probably not feasible. However ICD 11 is going to be structured differently to ICD-10 with the potential for a named disease to appear under more than one subheading, how this will work I’m not clear but a more expansive listing of M.E/CFS/PVMS etc could well be of benefit to the cause of M.E/CFS patients and to researching the disease(s).

* http://forums.phoenixrising.me/inde...writing-about-me-cfs.28165/page-2#post-429506

IVI

 

[alex3619]

@In Vitro Infidelium is right, ICD is only a classification system. It does not prove anything. However its not just doctors who use it. Its government too, and insurance, and possibly others.

The issue with just being a classification system is one big reason why I have been warning about using the claim that ME has a neuro classification in the ICD. It means very little as proof.

It means more in a political framework though. Doctors code disease, as do bureaucrats. Suddenly all the codes will be psych codes. This isn't a whole lot different from now, what has changed though is doctors who want to code ME as neuro will no longer have that option.

The ICD recoding can still be fought though.

In the final analysis it still comes down to the science. Continue expanding our knowledge of ME as physical, the details of the pathophysiology and (hopefully) the cause, and the ICD label will mean little. Validated, robust diagnostic biomarkers will change everything. Currently the most robust is the 2 day CPET. I really suspect every patient might have to consider doing this if they can get the funding together (it will not be free) and think they can handle it. Its indisputable proof of real physical disability, even if it turns out to not be diagnostic. Lipkin or others might come up with a less risky and less expensive test. I hope so.

In the meantime, let me emphasize that fighting psychogenic medicine is not just about ME. Its about all psychogenic diagnoses. The track record in the scientific history timeline is abysmal. Zero times fully validated, oodles of times proven wrong. Hysteria was always the ultimate too hard / wastebasket diagnosis. Now we have BDD. The (Infernal) King is dead, long live the (Infernal) King!