• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

"Fatigue is not a disease" - Unger Responds, Advocates Launch Petition

View the Post on the Blog

Fight-or-Give-In-277x300.jpg

On May 12th, 9 ME patient organizations (including Phoenix Rising) and 26 advocates sent a letter to Secretary Sibelius, Dr. Howard Koh, Dr. Thomas Frieden and Dr. Francis Collins at the Department of Health and Human Services (DHHS). In that letter, we expressed our strong concerns about the department's current definition activities related to "CFS" and called on them to start using the Canadian Consensus Criteria for ME, which requires the hallmark symptom of post-exertional malaise. A summary and FAQ about the letter is here, and the Phoenix Rising article about it is here.


Tell DHHS: Fatigue is not a disease

For those of you who wish to become part of this important initiative, a petition has now been created calling on the DHHS to stop using the term "chronic fatigue syndrome" and the vague "CFS" definitions and start using the Canadian Consensus Criteria. We urge all our members and readers to please sign the petition and spread the word to everyone you know.

If we get 25,000 signatures in 30 days, we will try to take the petition to the White House. It's a huge goal, but even if we don't reach it, we will use the response as further evidence of patient interest in addressing this critical issue. The more signatures we can get, the more pressure we can apply to the DHHS to stop perpetuating the "web of confusion" that has confounded ME research, made drug development all but impossible, and led to the inappropriate and sometimes harmful guidelines currently applied to "CFS" patients. To join that effort and sign the petition, please use the following link:

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/


Elizabeth Unger's Reply

Elizabeth Unger (Chief of the Chronic Viral Diseases Branch at the CDC) has now replied to the letter as follows:

Sent: Wednesday, June 5, 2013 5:58 PM
Subject: Response to signatories of May 12 letter c/o Marry Dimmock

Dear Patient Organizations and Independent Patient Advocates:

Thank you for your letter to Dr. Thomas Frieden, Director of the Centers for Disease Control and Prevention (CDC), stating your concerns about the Department of Health and Human Services (DHHS) activities related to the definition of Chronic Fatigue Syndrome (CFS), as well as your suggested steps to improve research and treatment. Your email was forwarded to me as Chief of the Chronic Viral Diseases Branch that studies CFS at CDC.

I can assure you that CDC is aware of the issues you have described and recognizes that patient advocates are essential partners in moving forward. CDC is fully committed to working with the CFS Advisory Committee (CFSAC) and DHHS to develop consensus about the case definition and name of this devastating illness. The need is not only for a case definition but also for reproducible standardized approaches to applying it, as well as for biomarkers to refine subgroups within the overall CFS patient population.

We are encouraged by the increasing engagement of NIH, FDA, HRSA, and AHRQ through the forum provided by CFSAC. The NIH’s State of the Knowledge Workshop on Myalgic Encephalomyelitis (ME)/CFS Research and AHRQ’s Systematic Review of the Current Literature Related to Disability and CFS are essential steps towards our shared goal of improving care for CFS patients. Likewise, the FDA’s Workshop on Drug Development for CFS and ME has provided new opportunities to capitalize on the energy and collaborative spirit of federal partners and stakeholders. CDC remains dedicated to conducting public health research, developing educational initiatives, and validating CFS phenotypes by utilizing the clinical expertise of physicians experienced in the care and treatment of CFS patients. CDC will continue to engage CFSAC, public health partners, and patient advocates in the development of control and prevention strategies to reduce the morbidity associated with CFS and to improve the quality of life of persons with CFS and other similar medically unexplained chronically fatiguing illnesses such as ME, fibromyalgia syndrome, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis.

Sincerely,

Beth Unger


Satisfied?

At the recent Invest in ME conference, Dr. Andreas Kogelnik began his keynote address with a cartoon highlighting what we don't want: "We're ready to begin the next phase of keeping things exactly the way they are". Workshops and systematic reviews are all very well, and perhaps the department's belated efforts will bear fruit one day, but the patient community is demanding real change now.

In October 2012, CFSAC called for an urgent stakeholders' workshop on a case definition, using the Canadian Consensus definition as a starting point. On May 12, 2013, 9 patient organizations and 26 independent advocates called for DHHS to adopt the Canadian Consensus definition for ME and dismantle "CFS". In response, we have been told that preparations for a systematic review of the current literature are under way, the agencies are demonstrating 'increasing engagement' and as advocates we are 'essential partners in moving forward'.

That isn't an answer, it is not what we called for, and it simply isn't good enough. If CDC is "aware of the issues" we described in our letter, then it is aware that its continued failure to adopt a disease appropriate case definition is unproductive and harmful to patients. It should make the appropriate changes now to mitigate that continuing damage. We can't afford to wait for the various agencies to gather evidence in a process which by their own admission has - so far at least - excluded those patients who are bed-bound.

We do not claim that the CCC is a perfect case definition, and many of us would ideally wish for the DHHS to leap ahead to the ICC, but the adoption of the CCC would be a huge step forward. As we said in the rationale for our recommendations, we believe that "it provides the best option to establish a disease appropriate baseline definition in the short term that can readily be further evolved in partnership with ME experts as additional data, knowledge and experience is gained, and as the definition is further operationalized and biomarkers are validated."

So if you're not prepared to wait - until 2014...or 2015...or 2016 - for the DHHS to eventually come up with its own consensus case definition for ME, then we urge you to join us in calling on the DHHS to enter the 21st century and adopt the 2003 Canadian Consensus definition. Please sign the petition - and don't forget to ask your friends...

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/





Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you're able to offer your time, we could really use some more writers, proof-readers, fundraisers, technicians...and we'd love to expand the board of directors. You can even donate significant sums, at no cost to yourself, as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.


View the Post on the Blog
 
Can I ask,

What are the differences between the CCC and ICC criteria?

why dont people feel the ICC criteria is achieavable ? (or appropriate)

Ever heard the analogy: 'can of worms'? :) Only kidding. Your question gets to the nub of things but will take a while to debate 'which one is better' and 'achievable' if indeed either really are.

Personally, I surrender :) Always liked Status Quo myself. Was a bit of a 'rocker' in my youth. Some also say I like sitting on the fence and letting others decide my 'fate' - but it doesn't half leave you with a sore bum :) :)

Sorry. No offense folks....
 
Very much a non-answer, yes Bob.

I'm not completely pessimistic about the systematic review though. I think something useful might come out of that, and from the other initiatives (like the CDC multi-site study). I find it quite understandable that the federal agencies feel the need to proceed in that way, and respond to these requests with the kind of tools they have, and nobody (I think) disagrees with Unger about the importance of finding biomarkers and other evidence to support eventual definitions. The problem as I see it is all the ongoing harm that's caused while they're working through all that, when there is already more than ample evidence of that harm and it's clear that short-term solutions to the problem of the "wastebasket" they've created for us are available now. (And of course we have no real basis for confidence that they'll do a good job of it this time, and plenty of reasons to fear that they're still determined to do it in a way that completely misses the point).

So I'm not blindly optimistic about what the systematic review will throw up, but I found a few of the comments about it at CFSAC fairly promising. One key point that was stressed is that really what it will tend to do is identify the gaps in the research; the key issues, the unknowns, the things that need to be clarified - and that this will then be used to guide what research should be done next. It's quite interesting to think about what that might highlight. If it concludes that the research so far doesn't amount to much, then it has to also conclude that much more research is needed. If it finds issues like NK cells and other immune abnormalities inconclusive, then it pretty much has to say what needs to be done to resolve those questions. And assuming it reviews both of the halves of the literature that you describe, Bob, then it would seem to me that the picture you have sketched is accurate: there are two camps, one researching one broad definition and CBT, and the scientists researching the biology of the disease using a narrower definition. One possible conclusion from that picture that might seem to leap out is that the two should be seen as separate entities, and separated, and that the best candidates for tests that seem to distinguish the disease need to be studied with large multi-site studies.

So I think it's quite possible that some useful conclusions may come out of the review. Oh, and if the review takes a close look at PACE (the study, not the spin), with no axe to grind, asking what it tells us about which subgroups are helped by which treatments (allegedly a key question for the review) then they may well come out of that with some rather scathing conclusions. I'm not blindly optimistic, but I don't assume a pessimistic conclusion either.

My main problem with all this is that this is an incredibly slow process, and while it's fine for them to go down that road, they need to make interim changes now. The letter and petition are aimed at what we think is the most realistic shot for a strong campaign to demand those changes, and I don't personally imagine that anything that happens now could be the final word on the case definition. I think pretty much everybody now recognizes that as soon as there's been proper, thorough investigation of biomarkers and other evidence-based diagnostic metrics, the emphasis around case definition will shift from the existing definitions to new and more 'evidence-based' criteria, so I personally see the CCC (or indeed the ICC) as inevitably short-term solutions while that other work is being done. I think that the emphasis around case definitions will increasingly move towards biomarkers and objective metrics in the coming years, and anything that happens now is bound to evolve as that evidence comes in. But in the meantime, we need recognition of something considerably better than Fukuda, especially to help make that research on metrics more meaningful and to reduce the number of patients with PEM or PENE who are being told to exercise and ending up bedbound as a result.


Interesting thoughts, thanks Mark.

I haven't yet seen the section of the CFSAC meeting where they discussed the systematic literature review. I'm waiting for the videos to be posted online. But, based on past history of CFS, and my limited understanding of systematic reviews, I'm not optimistic. I think that systematic reviews tend to be very conservative, by their nature, and not at all forward looking or radical. They also don't always necessarily discriminate bad research from good research, or certainly not in robust terms. I don't think we should expect much from it. But I'll be delighted if I'm proved wrong.
 
Ever heard the analogy: 'can of worms'? :) Only kidding. Your question gets to the nub of things but will take a while to debate 'which one is better' and 'achievable' if indeed either really are.

Personally, I surrender :) Always liked Status Quo myself. Was a bit of a 'rocker' in my youth. Some also say I like sitting on the fence and letting others decide my 'fate' - but it doesn't half leave you with a sore bum :) :)

Sorry. No offense folks....

Oh!

Well what do you do with a can of worms?

Find a nice meadow, and release them to make rich soil so that the plants grow strong and well :)

I only interjected so I could make an informed decision to sign the petition or not....

So far, I think all points have been well raised . But I am not aware of all the goings on.

I dont think debating should be a cause for concern. But also , even if the petition was suspended and updated - i think this is admirable not shameful.


Sometimes its a bit embarrassing (pasty tax) etc. sometimes enlightening - 'we have listened to the people and are changing appropriately' .... So I wouldn't worry about losing face.

Personally , I find the WORST problem to be a 'psychiactric definition by default' -

And I think this fundamentally creates all this label chaos...


As for 'compromise' - sometimes its OK and sometimes it really does harm.


Mark@

I said to my friend - there is a new campaign that states Fatigue is nothing a disease ...

And he nearly blew my head off in my defence ....

It took me ages to try to explain to him it was for my benefit - he would not agree .

You make very good points. -

I remember the worst abusive doctor i ever had the misfortune to seek help from.

I was very flexible in those days , and I stated "I can see the problem with putting names to things " as we discussed labels . (He wrote this in my medical notes in fact. He was agreeing . Then next to it he wrote "Depression".

This was ridiculous. Depression by default - soon after -another Doctor clearly stated M.E.
 
Pain isnt necessarily for a diagnoses under the Canadian CFS criteria defination if you had an infectious illness type onset.

I don't think I had, unless it started a lot earlier and at a very low level. Mine (at least when it became obvious) followed prolonged stress, over-exertion, depression, diarrhoea, vomiting and malnutrition.
 
I don't think I had, unless it started a lot earlier and at a very low level. Mine (at least when it became obvious) followed prolonged stress, over-exertion, depression, diarrhoea, vomiting and malnutrition.

Hi MeSci , all conditions which can cause dormant pathogens you are already carrying to reactivate as your immune system becomes stressed. I am very mindful of a paper last year that showed every pathogen we are considering might trigger ME infects two things: the gut and B cells.
 
Hello Firestorm,

The phrase "fatigue is not a disease" came from Erica Verrillo. See ProHealth post: http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=18131

Thanks. Very kind. Sorry I haven't acknowledged before :)


Answered by someone else above (thanks!) but as to the title of the article, it's taken from the title of the petition.

I find the point that golden makes - that this might be a risky slogan, because it could be turned around against us - quite interesting and thought-provoking. I've been reflecting on that, and my thought is that in the end this just illustrates what a good issue it is to highlight. What we're really saying here is: This is a disease, not (just) fatigue. It's a starting point for thought about the issue, and yes anybody could take it in either direction, but if somebody were to say "yes, fatigue is not a disease, it's just fatigue, so you shouldn't call it a disease" then the answer is easy: list all your other symptoms and say "exactly, I don't have fatigue, I have a disease with many symptoms, so the name is completely inappropriate for me (and for M.E.)".

I wonder whether any good slogan is open to cynical misinterpretation to mean the opposite of what it says. I think maybe the value of any slogan is that it opens up a sharp and important question and makes it clear what the issue is, but slogans in themselves never prove anything or win arguments.

Having said all that, "This disease is not 'fatigue'" might be better.

Hmmm...

For the record I'd assumed 'fatigue is not a disease' came from Unger given it was in the title of this article; sorry about that dude.

You know I'd written some bumf about my ruminations on this phrase but then deleted it all to spare you further pain ;)

Let me just say that I disagree with some of the thinking over this phrase and the way it has been used.

Patients in general do not like the word fatigue because the single word does not sum-up all that they are experiencing. How can anyone encapsulate all of 'this' in a single word? How dare they.

Is 'chronic fatigue' any better? Hmm... if 'fatigue' is experienced by someone with MS as a symptom caused by the inflammation of the myelin sheath - then is this a satisfactory description when applied to someone with - I don't know - cancer?

And so 'our' chronic fatigue is actually far worse than that experienced by someone with only cancer-induced-fatigue. Hmmm....

"This disease is not just fatigue!"

Any better? You know there are some who believe they do not have 'fatigue' at all. No exhaustion. But still have ME. Interesting, don't you think?

Fatigue is not a sign it is a subjective symptom - though probably not one that patients actually use: so they might say 'exhausted' and a doctor interprets this as 'fatigue'.

The issue here is also that fatigue is not specific - it doesn't allude to a cause. And it can't - at least not yet. Although patients would rather see 'immune dysfunction' or something even 'brain inflammation' rather than the fatigue that they feel. Interesting...

As a patient I'd like to have something that labels me with a word people recognise as something serious - a reflection of my inability to function at normal levels; a reflection of my struggle; my pain. People who don't know me.

I'd really like people to ask me 'what's wrong?' and for me to be able to tell them my diagnosis and for them to say 'well you are coping remarkably well. I've heard of that. Very nasty.'

A word like 'cancer' would do it. Of course I have no idea what it's like to live with cancer or to live with the effects of chemotherapy. But a name like cancer carries connotations that a word like 'fatigue' doesn't.

However, our label is not just 'fatigue' it is Chronic Fatigue Syndrome. Like it or not. And fatigue is not a disease but CFS is. To the extent that it is currently reflective of patients who present with a cluster of symptoms - one of which is 'fatigue' as defined by whatever criteria a doctor cares (or doesn't care) to use.

Unfortunately, few diseases carry the connotations that cancer does and CFS is one of them. But CFS as a name could be improved but then so could understanding - through education. The name will be changed as and when people are phenotyped I would imagine. You'll see them 'drop-out' into other small pots.

So this is really about how doctors diagnose their patients - if you read that lady's article from which the quote appears; isn't it? That they shouldn't 'simply' diagnose someone because of their reported or interpreted 'fatigue-state'.

That there's more to this diagnosis - this disease - than simply fatigue. And there is.

Ha! And I said I was going to spare you :) Promise my earlier draft from yesterday was worse :nerd:
 
As a patient I'd like to have something that labels me with a word people recognise as something serious - a reflection of my inability to function at normal levels; a reflection of my struggle; my pain. People who don't know me.

I'd really like people to ask me 'what's wrong?' and for me to be able to tell them my diagnosis and for them to say 'well you are coping remarkably well. I've heard of that. Very nasty.'

Yes, I think that we would all like that , but I think the issue here is much more grave and dangerous. The problem as I see it with the current name of CFS is that the medical community has such a dismissive way of dealing with the patients it labels, that it borders on dangerous.

Because of my CFS diagnosis, my local GP thinks of me as a complainer and exaggerator. When I tell him that I have been bed bound for months, he gives me a smirk and thinks of what new antidepressants he can shut me up with. When 6 months ago, I came in with scary new symptoms of numbness in my lips and tongue, he laughed it off as a sign of stress. Knowing better than that, I followed up with a neurologist who took an MRI of the brain. They found I had a brain tumor for which I needed radiation therapy.

I spoke about this in my CFSAC testimony. Very few doctors will take this illness seriously with the current name of Chronic Fatigue Syndrome. This is where the viscous cycle begins. Unger says, before we can change the name or choose a set of criteria we need studies, research, biomarkers..etc. But, how can we have the proper studies and research when so few are taking this illness seriously or when there is no funding for us available. If we had a proper name and a proper set of criteria, it will naturally follow with more interest and funding......
 
Hi MeSci , all conditions which can cause dormant pathogens you are already carrying to reactivate as your immune system becomes stressed. I am very mindful of a paper last year that showed every pathogen we are considering might trigger ME infects two things: the gut and B cells.

I expect all people are carrying inactive pathogens from past infections, and that the difference with ME is additional stressors or combinations of stressors.

It still doesn't account for those of us who get very little pain so would seem to fall through the CCC definition. Unless I have missed something. My IQ is rather lower than usual!
 
A few recent posts wondering about fatigue and pain have reminded me of Rayhan's thought-provoking presentation at IiME (see http://phoenixrising.me/archives/17049). A couple of them on this thread, so I'll just briefly summarize the idea.

In GWI, they seem to be finding two groups of post-exercise response: post-exertional fatigue and post-exertional pain. They found correlations between those findings and their brain scans: it appeared that those with post-exertional fatigue had increased compensatory brain activity in activity-related areas of the brain, whereas those with post-exertional pain had increased compensatory brain activity in pain-related areas of the brain. It's a fairly small study, and not published quite yet I think, but it suggests an intriguing hypothesis. Their basic idea from these findings is that the fundamental problem is some area of the brain that is damaged, and under physical stress, the brain compensates for that by using other areas of the brain; if it uses 'pain areas' you get post-exertional pain, and if it uses 'fatigue areas' you get post-exertional fatigue. A very rough and crude description on my part, but I think that's the basic idea. Since seeing that presentation, I find that I thinking about it quite a bit: the distinction between fatigue and pain as two kinds of downstream symptoms, and the idea that these different symptoms might stem from a common source of dysfunction, might make a lot of sense in terms of understanding some of the more mysterious aspects of the heterogeneity of ME/CFS.
 
Hi Mark, even if that describes much of the pathophysiology it does not mean the cause is in the brain. The brain could be compensating for peripheral damage, or even just deranged peripheral signals (including small fiber polyneuropathy).

In the case of ME there is now ample evidence of CNS dysfuction, including lesions, and also peripheral dysfunction. It might however help explain some of the range of symptomology in ME, and also some of the data coming from studies like the Light's exercise research. Presuming of course that similar findings can be made in ME, which might not be the case.

One of the things I keep asking myself is what if many of these disorders are the same disorder, but they involve so many systems that individuals vary greatly in their response? Such would then appear to be multiple syndromes: fibro, ME, IBS, MCS, GWI etc. There would also be considerable overlap between syndromes, which is what we also see.

If Rituximab pans out then most theories of ME are dead or dying, at least with respect to the responding subset. Every theory will have to take into account why depletion of B cells results in a cure or substantive remission.

Alex.
 
Their basic idea from these findings is that the fundamental problem is some area of the brain that is damaged, and under physical stress, the brain compensates for that by using other areas of the brain; if it uses 'pain areas' you get post-exertional pain, and if it uses 'fatigue areas' you get post-exertional fatigue.


Thanks for that summary - unfortunately I was experiencing post-exertional stupidity o_O when I read about his work and couldn't get my head round it so this is most helpful!
 
Hi Golden, RE

Can I ask,

What are the differences between the CCC and ICC criteria?
The main differences between the CCC and ICC criteria are, that the CCC is a criteria for ME/CFS it states that ME and CFS are the same disease! It only states that some more symptoms should be required for a diagnosis than are included in the CDC Fukuda definition.

A review of faults in the CCC can be found here http://www.hfme.org/canadianreview.htm

This makes the entire point of the letter to Kathleen Sebelius secretary of DHHS completely redundant, because they are asking for ME to be seen as a separate disease to CFS, and are asking for the use of the CCC, but the CCC says that ME and CFS are the same disease.

Which is why I urge people not to sign this petition, because it will only continue the false view that ME and CFS are the same disease.

The principle author of the CCC is the same as that of the ICC, in the ICC they corrected the mistakes of the past, and stated that it is a definition for ME only, and stated that ME is not CFS.

Another main difference between the CCC and the ICC, is that the CCC states as do the CFS definitions such as Fukuda that adult patients must have the symptoms for six months before they can be diagnosed.

Making patients wait six months before they can be diagnosed is from a medical and patients suffering point of view in my opinion complete madness!!

The ICC has corrected this and doesn’t require patients waiting for six months before they can be diagnosed.

A more detailed account of some of the faults in this petition can be found here http://www.mecfsforums.com/index.php/topic,16318.0.html

My personal opinion is that the use of the CCC, will be disastrous for ME patients. Because it says that it is the same disease as CFS, and the only real difference between it and Fukuda is that a few extra symptoms are required. By continuing the wrong belief that ME and CFS are the same disease it only plays into the hands of the likes of the CDC, it gets them off the hook for not investigating ME.

However these are my opinions and I do not wish to try and force them on others.

I would though suggest that every one considering signing this petition makes themselves very acquainted with the real facts before signing it. Unfortunately the US orgs have followed their usual protocol of asking for peoples signatures without consulting people first, which makes people feel rushed to sign it without a full knowledge of the facts.

My recommendation to people because this is such an important matter, is that they take the time to read and fully understand the letter from the US CFS orgs to the Secretary of the DHHS Kathleen Sebelius, the CCC, the ICC, and the International Association for CFS/ME Primer which is being recommended by the US orgs in their letter. And once people have acquired a full understanding of these documents they can make the discussion for themselves, without in my opinion being railroaded into signing it by the US CFS orgs when people don’t have all the fact.

If people do not have the energy for reading all these often very lengthy and medically technical documents, I suggest that they simple abstain from voting, rather than risking signing a petition that could potentially have a very detrimental effect on their chances of ever getting effective treatment.

Hope this helps

All the best
 
Okay, maybe I'm oversimplifying the matter, but sometimes it helps to look at the forest and ignore the trees.

DHHS needs to understand that there's a lot of us (with supporters) who are seriously concerned about the problem of the name CFS and the use of ridiculously broad criteria like the CDC Empiric or Oxford. The likelihood that anything will happen exactly as requested in the petition is nil. The real benefit of this petition is most likely to be the whack upside the head that some individuals in positions of authority will get -- a realization that there are a lot of us and we mean to start knocking on their doors.

This is our own version of "I'm mad as hell and I'm not going to take it any more!" It's our line in the sand. This is about standing together and making ourselves heard. It's political, not scientific. The details are irrelevant. Does anyone really expect the DHHS to say, "Oh yes, you're exactly right, nail on the head. We'll do exactly as you say."? Of course not. The details are going to be argued and debated to death after the petition is read however we write it. What is important is that we are seen and heard as a community to contend with. For that we need to forget our differences and get ourselves heard. This petition can do that for us if all of us unite and sign this petition as a message to DHHS that we are here and we intend to be heard.
 
Hi SOC, RE

This is our own version of "I'm mad as hell and I'm not going to take it any more!" It's our line in the sand. This is about standing together and making ourselves heard. It's political, not scientific. The details are irrelevant.

I was under the impression that one of the things that people are as mad as hell about, was the continual attempts to ignore the existence of ME, and trying to say that ME is just another name for CFS.

So I don’t see that asking for a Definition the CCC that says that ME and CFS are the same disease is going to help the problem.

Personally I think people should be getting as mad as hell with the US CFS advocacy groups, who are taking money from ME patients in the form of donations, not even consulting with the patients and then telling the US government that they represent us, and that we would like the US government to recognize that ME is the same disease as CFS, which is what the CCC says.

Maybe people should be drawing a line in the sand with the US CFS advocacy groups.

All the best
 
I was under the impression that one of the things that people are as mad as hell about, was the continual attempts to ignore the existence of ME, and trying to say that ME is just another name for CFS.

So I don’t see that asking for a Definition the CCC that says that ME and CFS are the same disease is going to help the problem.
The letter calls for the CCC case definition to be used and called "ME", and CFS to be disbanded. Which is pretty much the opposite of what you describe there. I see why you find that a confusing approach when the CCC, at the time, called the thing it defined "ME/CFS", but I don't personally see the name as being as important as the definition, and I don't see any particular problem with now re-naming it as an ME definition rather than an ME/CFS definition. Since the letter itself is calling for ME to be used and CFS to be disbanded, it's clearly not saying that ME and CFS are the same disease.


Personally I think people should be getting as mad as hell with the US CFS advocacy groups, who are taking money from ME patients in the form of donations, not even consulting with the patients and then telling the US government that they represent us, and that we would like the US government to recognize that ME is the same disease as CFS, which is what the CCC says.

Maybe people should be drawing a line in the sand with the US CFS advocacy groups.
"Asking the US government to recognize that ME is the same disease as CFS" is quite obviously the opposite of what the letter to the DHHS says, as anyone can see readily in black and white by looking at the letter. Calling for the use of the CCC as case definition is not the same thing.

I've never understood the mentality in politics whereby a minority of people on one end of a spectrum of opinion spend most of their time and energy attacking and undermining the people whose opinion is closest to their own, thereby undermining any attempt at opposition to the people at the other end of the spectrum who are supposedly their enemies. It's partly explained by the traditional tactics of the security forces, who have always infiltrated the extremes both to gain intelligence and to undermine the whole movement (for example see how Mark Kennedy acted as agent provocateur and tried to encourage peaceful activists to adopt more violent tactics, thereby convincing them he was genuine and undermining their cause at the same time). Given what's been said in the UK about the security forces watching ME activists and considering them dangerous, it would be surprising if the extremes of the ME activist scene were not infiltrated, but I don't think that can explain the whole phenomenon.

I personally think there are some genuine issues which can be improved in terms of consultation - this is a new exercise in collaboration for our community and there is always room for improvement - but the way to do that is to get involved constructively. Not to conduct negative campaigns about every flaw you can find in those closest to your own position, but to work with people to point out where there are problems and try to improve things. If you take the negative campaigning route, then it's hopelessly unrealistic to imagine that'll get you a seat at the table and encourage people to consult you more: quite the opposite and that's the root of many of our problems. And it works the same way all the way up and down, by the way - that's life.

The analogy that keeps buzzing round my mind the last couple of days goes something like this: If I'm driving a bus of people up from London to Glasgow, with a plan to go to Edinburgh when I can arrange it, and I stop to pick up a hitcher who says he desperately, urgently wants to get out of London because he hates it and he wants to go to Edinburgh, and then I tell him I'm going to Glasgow and he's welcome to a free ride, and he then gets really angry with me and says he wants to go to Edinburgh, not Glasgow, and he'd rather stay in London than go to Glasgow, and starts throwing things at the bus...then I'm going to wonder whether this guy really wants to get to Edinburgh, or whether he just wants to complain about not being there.

I can understand anyone not signing the petition if they don't agree with it, I can understand if they want to set up their own petition calling for the ICC instead (and if they get masses of signatures they could easily prove their point), and I can understand all the concerns about the consultation model, which we do need to develop, but what I can't understand is the apparent belief of some people that 'advocacy' consists of attacking and trying to destroy everything in sight, starting with the people closest to you. My suggestion: accentuate the positive: do your own thing, build your own positive movement, do something constructive and PR will surely support it, and remember the old and very wise saying that it's better to light a candle than to curse the darkness.
 
snowathlete: Great post, thanks for that. Worth a response in some detail I think...

So can I, actually, even though I've been arguing one side on this thread. I think there are some valid issues there, but the practical question right now is whether to get behind this initiative or not. On balance I'd say there's much more good than bad in this, and while there's room for improvement in future, the most important thing to me is for as many people as possible to get behind a positive initiative, even if it doesn't give everything that everyone wants

I agree. I signed the petition and I did so because I think it takes us forward.

Crucial point. The word 'consensus' is key for me: it implies a degree of flexibility and compromise. Getting lots of people together gives you the potential to achieve something. As a community, we sometimes spend far too much time focusing on the details that we don't like and not enough getting behind positive, though imperfect, projects. There's always something there to be found to criticize in anything; nothing's perfect. But we need a mass movement if we're going to apply pressure effectively, and a mass movement has to unite a lot of subtly different perspectives under one 'big tent'. I believe that realization is dawning on a lot of people in the ME/CFS world and we're all starting to work together a lot more effectively. It's very hard work to make that happen, but it is happening.

Why use words when an emoticon will do? :thumbsup:

Another crucial point. The landscape is always changing, and you build gradually on what came before. I'm personally not really expecting the details of the letter to all be implemented without further discussion, that doesn't seem likely to me no matter what you ask for, and even if it they were, it wouldn't be the end of the story or the end of campaigning. The point for me is to apply pressure and set out a clear vision of the direction you want to go. One way or another we have to get away from broad and useless case definitions and we need that as soon as possible, in order for that case definition to then evolve in a meaningful way. The CCC obviously isn't the final word, neither is the ICC. The point is to make progress rather than standing still; it's a process and a conversation, not something set in stone for all time.

:thumbsup:

The pressure may seem more positive from where you're sitting them where I'm sitting, to be honest :D ;

Thats a fair point! :D

I haven't really learned about any problems that I wasn't already well aware of and trying to work on, what I need is ideas and solutions and time and help to implement them. But I honestly do agree with you that some of Ember's questions are quite appropriate, and it's right to ask them. I wouldn't have spent so much time trying to answer them if I didn't, and I think there are some points in there which need some work.

Particularly in terms of how Phoenix Rising interacts with this whole process, that's the main thing that needs work, for me - there is a big and very important discussion to be had there and I believe we have the potential to contribute a lot in that area. I really don't want this thread to be about all that, because right now we want to focus on the petition and the campaign itself, rather than navel-gazing about how we make decisions as a community. But we honestly do want to have that discussion on how we can find a way for the community to engage with this work - honestly, the board doesn't want to have to make these kind of decisions on its own. The big problem there is that most of the work in these kind of initiatives just doesn't make much sense as open, public discussions. When you see letters signed by loads of prominent people and sent to newspapers, or governments, you don't see those letters being discussed and thrashed out in public before they're sent; most of the time that kind of process would undermine the whole effort. For impact, you sometimes need those things to be unveiled like a press release. Petitions are different; everyone can start them and everyone's free to sign up, or not. So part of the problem for PR is that we don't have elected representatives who can then work on advocacy efforts in confidence with a range of other groups. Other groups tend to work rather differently and they don't have public forums like ours for this stuff, so we're in a rather unusual position. We want to work with other groups, and our members have said they want us to do that, but the details do get complicated. We're still trying to figure out how all that might work.

And the whole question of CCC vs ICC is a totally legitimate question. That wasn't a straightforward or immediate question, and there's a range of views on it. In fact, personally my first instinct was for the ICC, but I was persuaded by the argument that the CCC has the benefit of a longer history of being used in practice - both clinically and for research - and the ICC would need more research, validation and momentum to be a practical target for this particular campaign. In the end, it's not just my point of view though, it's what the broad consensus is. I think part of the problem here is that for some in our community it feels strange that the conclusions of more than 6 months work kind of appear from nowhere, and the discussions that we now suddenly begin are the same ones that have been going on behind the scenes for some time. That's strange for us, because as I say, we're unusual in having this forum model of membership (and no formal membership or subscription scheme, at least not yet); it's not so strange for the other groups involved. I'd like to think that if we'd discussed all this openly we'd have all reached a consensus that everybody can unite behind and there'd be no more arguments or dissent at this point - but realistically I rather doubt that would ever be the case. There are always people with opposing views who just aren't ever going to compromise; you can't please all the people all the time, as hard as you may try...

I do think we've tried really hard to answer people's questions; I know I have and it's taken a lot out of me at a very busy time. Some of them have been really tough to answer, either because I didn't know all the answers on points of detail about the process, or because I've needed to check with others on what aspects were confidential or needed confirmation. It's also never easy to answer on behalf of a group, on behalf of a consensus process, and explain the rationale for decisions, especially when your individual answers are being taken as if they represent the opinion of the whole group, as if there were some simple and well-defined 'groupthink' opinion rather than the result of a process. And there's been CFSAC, and Invest in ME, and lots more besides going on at the same time, but people don't see all that other work and often want answers to their questions right away.


A lot of good points. I think its a real challenge and its more obvious here for the reasons you mentioned, than it is for many of the other organizations, and i think thats a strength that PR brings to the group. I also think that what these challenges demonstrates is that a) its an important topic that people want to talk about, so the right sort of thing to major on in advocacy campaigning, and b) although this forum isnt totally representative, it is an open public forum so a lot of the views from the community are expressed here, and so its vital for ALL the orgs who are involved to take particular notice of that because ultimately all these orgs need to have as much public support from the wider community as possible in order to be sucessful in their efforts, and of course to reflect most accurately, the consensus within the community. I'm certain that PR recognizes that, its clear from what you're saying and hopefully the other orgs get it as well.
In the future, I guess id hope to see people from the other orgs involved here in such discussions because its good practice i think, and as you pointed out, it is a lot of work for one or two people to reply to all the inevitable questions and concerns, and it doesnt very well reflect the fact that it was a concensus decision that was reached, not just you or medfeb, for example. Thanks for doing so much of that this time around, btw (we dont say it often enough)!

So your analogy with Unger's response to the community is a good one, but I'd just add that medfeb and I are just individuals too, in the context of the advocacy group, and indeed Unger is an individual within her own context as well; none of us have the power to make everything the way we want it to be, and none of us can fully represent the opinions of everyone in the group, even if we're seen as speaking on behalf of the group.

As above, that's not just up to me, but I do want that engagement and that chance for input as much as possible. If we'd had a better response to our appeal for people to join an advocacy group, we'd have set that up and those people would probably have been involved in this process, so in that sense there was an opportunity to be involved which wasn't taken up. We did join this particular process a bit late in the day, and it has never been a public discussion for the reasons I mentioned above. It is really hard to figure out how it ever could be, but believe me, we are all listening to the points made and trying to figure out a way to get that involvement. I will say one thing though: there has never been any barrier to people contacting me and offering to get involved in the work on this or on anything else. The people who do all this stuff are the people who have volunteered to do that work, and we do want lots more people to join the team and help out with that. Very few people seem to want to be involved at that level; they generally want to spend a few minutes making comments or suggestions but don't have the time and energy to think through all the ins and outs, but when you're spending 6 months discussing complex issues with a large number of other representatives, a degree of commitment is necessary to work through all those issues. But anyway, figuring out a way to canvas opinion without compromising embargoes and confidentiality, and how to give a clear route to engagement in this process for PR members, is very much on the agenda.

Indeed - people should get involved in the actual core of things if they can, and some people can im sure. Thats how we will get a stronger voice and be more effective as a community. I think weve seen the benefits of that from a number of people in the community who are doing this work already, and I hope it encourages more people to get involved and help out.

Absolutely, and amen to that! If you want to work as part of a team, that's an essential requirement.

:thumbsup:
 
As a patient I'd like to have something that labels me with a word people recognise as something serious - a reflection of my inability to function at normal levels; a reflection of my struggle; my pain. People who don't know me.

I'd really like people to ask me 'what's wrong?' and for me to be able to tell them my diagnosis and for them to say 'well you are coping remarkably well. I've heard of that. Very nasty.'

I can relate. What would you pick if you got to pick the name for yourself?
I mean, let's just pretend for a second that the CDC phone you up tomorrow, after reading this and say, "You know what Firestorm, you're absolutely right! Sorry for dicking around these past decades and treating you all like dirt. We're serious about this now. It's going to be on every news chanel tonight, and we're increasing funding 10 zquillion percent. But, we arent sure what you call it - what do you reccomend?"