Webinar on Chronic Pain Conditions & the Overlapping Conditions Alliance

[justinreilly]

The problem I have with the prominence of the term "overlap" is that Wessely and the others are claiming that all 'unexplained medical symptoms/syndromes' are actually one entity or mental illness and you just get a 'cfs' diagnosis if you see an internist, a fibro if you see a rheumatologist, IBS if you see a GI, etc., ie we all suffer from one disorder- somatization.

So I just want to urge precision. I wonder why this org wasn't called something like the Women's Pain Disorders Assn or something else more precise and descriptive of their mission.

 

[jspotila]

It's not yoou gracenote. For some reason the site is down.

I'll try to find out what's going on with the site.

ETA: The Association does not actually host this site; another member organization does. They are looking in to the problem.

 

[Otis]

I'll try to find out what's going on with the site.

Thanks Jennie. I just tried again and it seems OK.

www.overlappingconditions.org

redirects to here:

www.tmjds.org/drupal/

If I recall correctly that's how it was before. So for now if the first link doesn't work the second one should. For technical reasons I won't belabor it sometimes takes 24 hours for a broken link like this to get fixed.

 

[gracenote]

I'm just really weary. This doesn't help. From the overlapping conditions website:

www.overlappingconditions.org

How is CFS treated?

. . . .

Alternative therapies are often explored in an attempt to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help and are often prescribed for symptom management. People with CFS often experience guilt, anger, denial, financial pressures, anxiety, and depression because of the limitations imposed by this illness. Learning to cope with these emotions and to make appropriate lifestyle changes is one of the best ways of managing CFS. Therapies that help people improve coping skills include counseling for emotional and mental health, deep breathing and muscle relaxation techniques, cognitive behavioral therapy, and massage.

Learning to manage activity levels is vital to managing the illness itself. This requires a new way of defining exercise. Although vigorous aerobic exercise is beneficial for many chronic illnesses, traditional exercise routines may not be tolerated, so exercise programs aimed at optimizing aerobic capacity arent recommended. Instead, learning to pace activities and working with a healthcare practitioner to create an individualized exercise program that focuses on interval activity or graded exercise may be the best approach.

If I had the energy, I would reference information from the "functional somatic syndromes" literature.

Instead, I will direct you to Annette Whittemore's CFSAC testimony posted on facebook (I don't see it on WPI's site yet). She ends with this quote:

Martin Luther King, Jr. once said, The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.

Annette Whittemore's Testimony for CFSAC Meeting May 10, 2010

Courage everyone!

 

[Otis]

I'm just really weary. This doesn't help. From the overlapping conditions website:

How is CFS treated?

. . . .

Alternative therapies are often explored in an attempt to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help and are often prescribed for symptom management. People with CFS often experience guilt, anger, denial, financial pressures, anxiety, and depression because of the limitations imposed by this illness. Learning to cope with these emotions and to make appropriate lifestyle changes is one of the best ways of managing CFS. Therapies that help people improve coping skills include counseling for emotional and mental health, deep breathing and muscle relaxation techniques, cognitive behavioral therapy, and massage.

Learning to manage activity levels is vital to managing the illness itself. This requires a new way of defining exercise. Although vigorous aerobic exercise is beneficial for many chronic illnesses, traditional exercise routines may not be tolerated, so exercise programs aimed at optimizing aerobic capacity arent recommended. Instead, learning to pace activities and working with a healthcare practitioner to create an individualized exercise program that focuses on interval activity or graded exercise may be the best approach.

Oh my. I don't have the energy to comment further either. Taking a deep breath and moving on...

 

[Sue C]

And in the spirit of actions speak louder than words, I continue to be confounded by, and frustrated with the CAA.

Have restrained comments re CAA before as too angry with years of avoiding patients' priorities...but this! Another example of 'dilution' by overlap or grouping of such conditions tends to make them LESS significant. Time has been wasted and money down the drain while we suffer from misguided energies! Pain organizations and advocates already exist. But mention"CFS"
(fatigue) and failed efforts to change the much maligned misnomer of such a label, that in itself should shame any salaried position!
Sue C

 

[Lily]

I think it's important to emphasize Gerwyn's point that there is no evidence that these particular four conditions share a common cause. Therefore, it's not useful to group them.
I think the frustration with CAA that is being expressed here is that the CAA hasn't in the past emphasized the search for a cause above all else. The CAA appears to many of us to be willing to accept the possibility that there is no cause. People with the disease know there is a cause, because many of us got sick over night. Something caused us to get sick. People with ME/CFS are angry that the cause hasn't been found and that the medical profession and the general public assume that, since the cause hasn't been found, there is no cause. If there is no cause, then it must be all in our heads. This has been the logic used to abuse, ignore and marginalize ME/CFS patients for decades now. I'm trying to say this very calmly, because it makes me angry, too, and I don't want to seem like I'm ranting. I think the CAA will have fewer problems with the patient community if the organization keeps in mind at all times that there is a cause or causes; the cause(s) just hasn't been identified for sure yet. Once the cause(s) has been identified it will be possible to develop diagnostic tests and treatments. It may be possible to develop some diagnostic tests and treatments before the cause is definitively established. In fact, this has already been done by some of our best doctors. Unfortunately, they're not definitive tests or treatments because we don't yet have a validated cause. But it will be much easier once the cause(s) is established. I think the CAA needs to put up a big sign its office that says "It's the etiology, stupid". I mean no disrespect by saying this. I'm trying to be helpful. It does no one any good for patients and an advocacy organization to be at odds with one another.

There also needs to be another sign. This one should say "It's the definition, stupid." This sign could come down as soon as the CAA endorses the Canadian Consensus definition. Until we know who we're talking about we won't be able to find the cause. ME/CFS is not a "pain condition". It's ME/CFS. I think it was Dr. Cheney who pointed out that five of the Fukuda criteria involve pain, yet some of his ME/CFS patients don't have pain. I think he would agree that all of his patients have post-exertional malaise. Yet that symptom is not required to meet the Fukuda criteria, as Dr. Jason pointed out in his webinar. Every ME/CFS patient I know has cognitive problems. Most, if not all, have autonomic nervous system problems. And most, if not all, probably have cardiac problems, often undiagnosed. People with vulvodynia don't have these problems--they have vulvodynia. It is disheartening that the CAA doesn't seem to understand these basic concepts.

So, to go back to Gerwyn's point, it isn't useful to discuss "overlapping conditions" that overlap because they have pain in common. They don't have the cardinal symptoms of ME/CFS, post-exertional malaise+cognitive dysfunction+autonomic nervous system dysfunction+cardiac dysfunction, in common. It's unlikely they have a common cause. It's not useful to discuss them together.

The CAA's BioBank has great potential to address the issue of causality. It is critical that it's clear which of the tissues collected come from people who meet the Canadian Consensus definition and which meet Fukuda, and that it's possible to identify what constellation of symptoms each person has.

Please remember: there is a cause. It's just not definitively identified yet.

By the way, I realize this is an oversimplification. There are very annoying political and economic reasons why we don't have a cause. I'm leaving all that out to make a point. Also, I don't have the Canadian Consensus definition or the Fukuda criteria in front of me, and I do have cognitive dysfunction, so I may be leaving something out. It's the concept of a specific cause or causes for a specific constellation of symptoms that I'm trying to convey.

(My bolds and font size)

Also orignally posted by The Phantom:

As to the issue of NIH funding, I agree it's important to look at all possible sources for funding research into the causes of and potential cures for ME/CFS. However, it isn't useful to throw money in a direction that isn't likely to be fruitful, especially if the NIH then gets to say that it's spending a lot of money on CFS research when, in fact, it's researching pain syndromes or TMJ or endometriosis. I think we've been down that road before. We need research on ME/CFS.

I have very little energy to read or post so I struggled with whether to spend energy reposting what others have written but decided it was necessary.

Originally Posted by Otis:
And in the spirit of actions speak louder than words, I continue to be confounded by, and frustrated with the CAA.

 

[justinreilly]

I'm just really weary. This doesn't help. From the overlapping conditions website:

How is CFS treated?

. . . .

Alternative therapies are often explored in an attempt to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help and are often prescribed for symptom management. People with CFS often experience guilt, anger, denial, financial pressures, anxiety, and depression because of the limitations imposed by this illness. Learning to cope with these emotions and to make appropriate lifestyle changes is one of the best ways of managing CFS. Therapies that help people improve coping skills include counseling for emotional and mental health, deep breathing and muscle relaxation techniques, cognitive behavioral therapy, and massage.

Learning to manage activity levels is vital to managing the illness itself. This requires a new way of defining exercise. Although vigorous aerobic exercise is beneficial for many chronic illnesses, traditional exercise routines may not be tolerated, so exercise programs aimed at optimizing aerobic capacity aren’t recommended. Instead, learning to pace activities and working with a healthcare practitioner to create an individualized exercise program that focuses on interval activity or graded exercise may be the best approach.

www.overlappingconditions.org



If I had the energy, I would reference information from the "functional somatic syndromes" literature.

Instead, I will direct you to Annette Whittemore's CFSAC testimony posted on facebook (I don't see it on WPI's site yet). She ends with this quote:



Annette Whittemore's Testimony for CFSAC Meeting May 10, 2010

Courage everyone!

I don't really have a problem with the webinar, but that type of discretionary or low priority work should yield to the very high priority of cleaning up this misinformation and making sure no more of it is disseminated.

 

[jspotila]

I don't really have a problem with the webinar, but that type of discretionary or low priority work should yield to the very high priority of cleaning up this misinformation and making sure no more of it is disseminated.

The treatment section fo the CFS page now reads as follows:

How is CFS treated?
Since no cause or cure for CFS has been identified, treatment programs are directed at relieving symptoms. Although there’s no single treatment that fixes the illness at its core, there are treatment options that can improve symptoms, increase function, and allow people with CFS to engage in activities of daily living. Sleep problems, pain, heart rate irregularities, gastrointestinal difficulties, allergies, and depression are some of the symptoms that can be relieved through the use of prescription and over-the-counter medications. People with this illness may have unusual responses to medications, so extremely low doses should be tried first and gradually increased as appropriate.

Alternative therapies are often explored in an attempt to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help and are often prescribed for symptom management. People with CFS often experience guilt, anger, denial, financial pressures, anxiety, and depression because of the limitations imposed by this illness. Learning to cope with these emotions and to make appropriate lifestyle changes is one of the best ways of managing CFS. Therapies that help people improve coping skills include counseling for emotional and mental health, deep breathing and muscle relaxation techniques, cognitive behavioral therapy, and massage.

Learning to manage activity levels is vital to managing the illness itself. This requires a new way of defining exercise. Although vigorous aerobic exercise is beneficial for many chronic illnesses, traditional exercise routines may not be tolerated, so exercise programs aimed at optimizing aerobic capacity aren’t recommended. Instead, learning to pace activities to avoid a push-crash cycle may be the best approach.

CBT is listed only as a way to improve coping skills. Pacing is recommended instead of exercise.

 

[gracenote]

The treatment section fo the CFS page now reads as follows:

CBT is listed only as a way to improve coping skills. Pacing is recommended instead of exercise.

Thank you jspotila. I so appreciate your responsiveness.

I would prefer (to put it very mildly) that CBT not be referenced at all. There is no way to connect with the possibly "good" and "appropriate" CBT without connecting to all the "bad" CBT. Whatever help may potentially be offered by some practitioners is not enough to risk all the very misleading and damaging information that is CBT as we know it which cannot be avoided!

(Notice my restraint no caps, or bolds, or huge letters, and only one exclamation point.) :innocent1:

Please remove. Pretty please.

 

[jspotila]

Thank you jspotila. I so appreciate your responsiveness.

I would prefer (to put it very mildly) that CBT not be referenced at all. There is no way to connect with the possibly "good" and "appropriate" CBT without connecting to all the "bad" CBT. Whatever help may potentially be offered by some practitioners is not enough to risk all the very misleading and damaging information that is CBT as we know it which cannot be avoided!

(Notice my restraint no caps, or bolds, or huge letters, and only one exclamation point.) :innocent1:

Please remove. Pretty please.

It's not up to me personally, but I will pass on your comment. Thank you for not "screaming" at me with bold, all caps or bright colors! We need some kind of smiley that has whirly eyes all bugged out, which is what happens to my eyes when I read rainbow colored posts. Ooo, will have to suffice!

 

[CBS]

It's not up to me personally, but I will pass on your comment. Thank you for not "screaming" at me with bold, all caps or bright colors! We need some kind of smiley that has whirly eyes all bugged out, which is what happens to my eyes when I read rainbow colored posts. Ooo, will have to suffice!

Hi Jennie,

Thanks for passing along Gracenote's comments. Please add my name to the list that agree. I cannot stress enough my concerns about the association CFS with CBT, which was founded upon the premise of irrational beliefs and focused predominantly upon the treatment of anxiety. CBT is an area of psychology that has become controversial within the field of psychology itself as what defines the practice of CBT has become blurred in some quarters. My anxiety isn't about something irrational, it's about what the future holds given significant limitations and a trajectory that is generally downward. If that was creating anxiety (and at times I suspect it does for all of us), supportive counseling for adjustment issues, not irrational beliefs seems more appropriate.

Personally, rather than redefine exercise, I might add a word about activity management and the frequent need to do less, not more. Concerning exercise I would simply say that for many "exercise" is simply out of the question and potentially dangerous.

All of that said, I appreciate the attention to this and the move in the right direction.

Thanks for bringing this to the boards (and for all of your patience).

Shane

 

[justinreilly]

Thanks Jennie.

I agree with the others that CBT should be taken out.

This passage is basically the same as the ones we've criticized on the CAA thread, so my recommendations would obviously be the same as I made there. The second paragraph should read something like:

"Learning to manage activity levels is vital to managing the illness itself. Although exercise is beneficial for many chronic illnesses, it worsens CFS and thus is contraindicated. Instead, learning to pace activities to avoid a push-crash cycle is the best approach."

[Additions in italics. Some text edited out.]

 

[starryeyes]

I hope the CAA will remove any mention of CBT from it's materials.

 

[Stuart]

Question asked earlier: Why wasn't Fibromyalgia on the agenda (when it really is a overlap with ME/CFS).

Probable answer: Pfizer already has Lyrica approved for Fibromyalgia!

Other question: Why these diseases lumped together in the "Alliance."

Probable answer: Lyrica will be prescribed for them (maybe since many with Fibromyalgia have not tolerated it.).

 

[flybro]

Question asked earlier: Why wasn't Fibromyalgia on the agenda (when it really is a overlap with ME/CFS).

Probable answer: Pfizer already has Lyrica approved for Fibromyalgia!

Other question: Why these diseases lumped together in the "Alliance."

Probable answer: Lyrica will be prescribed for them (maybe since many with Fibromyalgia have not tolerated it.).

such cyniscism tsk, definetly a by-product of ME treatment.

unfirtunaely most likely a very accurate take on it.

plus it made me gafaw

 

[Mithriel]

Myalgic encephalomyelitis

ME was called "myalgic" because of the intense muscle pain involved. It was said that patients would scream if you touched them.

I have a strong suspicion that the "overlap" with fibromyalgia has come about since CFS did not have intense pain as part of its definition doctors would diagnose comorbid fibromyalgia. This would explain why stretching exercises often help true fibromyalgia. It is possible to have both diseases, but I think the comorbidity is exaggerated.

While US researchers will now talk about ME/CFS I still think some of them are very ignorant of the natural history of ME. (Like the way they keep talking about EBV but forget that the epidemics were associated with POLIO so enteroviruses are also important)

ME/CFS often has gut dysfunction but where this is actual IBS is another question. Again, the Fukuda definition is so short of detail about the illness that doctors are forced to diagnose comorbidities when they may all be part of the core illness. Enteroviruses cause gut issues for instance and then gut is a muscle so an illness like ME where muscle is damaged would expect to have symptoms in the heart, gut and so on.

Comorbities may exist in ME/CFS but having followed the literature for thirty years I believe that many of them are artefacts of the dire Fukuda definition.


Mithriel

 

[Orla]

I agree Mithriel, especially regarding the pain issue.

Orla

 

[Jerry S]

ME was called "myalgic" because of the intense muscle pain involved. It was said that patients would scream if you touched them.

I have a strong suspicion that the "overlap" with fibromyalgia has come about since CFS did not have intense pain as part of its definition doctors would diagnose comorbid fibromyalgia. This would explain why stretching exercises often help true fibromyalgia. It is possible to have both diseases, but I think the comorbidity is exaggerated.

While US researchers will now talk about ME/CFS I still think some of them are very ignorant of the natural history of ME. (Like the way they keep talking about EBV but forget that the epidemics were associated with POLIO so enteroviruses are also important)

ME/CFS often has gut dysfunction but where this is actual IBS is another question. Again, the Fukuda definition is so short of detail about the illness that doctors are forced to diagnose comorbidities when they may all be part of the core illness. Enteroviruses cause gut issues for instance and then gut is a muscle so an illness like ME where muscle is damaged would expect to have symptoms in the heart, gut and so on.

Comorbities may exist in ME/CFS but having followed the literature for thirty years I believe that many of them are artefacts of the dire Fukuda definition.

Yes, I agree. Well said. The Fukuda definition of CFS does not acknowledge many of the features of ME, or they are not required. Other diagnoses are then added to account for these features. In the Canadian criteria for ME/CFS, IBS is included as an autonomic manifestation. No separate diagnosis is required.

This is the section of of the the Canadian criteria on pain:

There is a significant degree of myalgia. Pain can be experienced in the muscles, and/or joints, and is often widespread or migratory in nature. Often there are headaches of a new type, pattern or severity.

Pain is required, with a minor exception only for infectious illness type onset.

Fukuda separates muscle pain, joint pain, and headaches as three of the eight symptoms - four of which must be present in addition to chronic fatigue. Pain is not a requirement, and a co-morbid diagnosis of fibromyalgia is sometimes given to account for CFS with pain.

I was diagnosed with CFS, fibromyalgia, and IBS. If the Canadian criteria had been used, I would only have an ME/CFS diagnosis.

The CDC has had 16 years to improve Fukuda. Instead, they attempted to operationalize it in 2005 with the disastrous empirical definition. No wonder their research program is stuck in neutral and patients can't get a proper diagnosis.

 

[Dolphin]

Lots of interesting points in this thread.
I agree with most/nearly all of them [except perhaps that webinars are a waste of resources (unless they actually are very expensive to hold?)].

Personally I have TMJ - I only got it when all other muscular problems were at their worst because of ME/CFS so it very much seems like a ME/CFS-caused problem. These days I don't chew much and I think some things I take such as amitriptyline mean that it is not much of a problem for me (although not chewing as much as I would like might not be good for my weight).

A couple of points: it took me over five years to get diagnosed. In that time, I had TMJ, IBS-type symptoms, Fibromyalgia-type symptoms, overactive bladder, etc - it would have been good if specialists had been on the alert for ME/CFS. ME/CFS advice is what I needed during that period - lowering the demands on me, pacing, resting, etc. So if something can be done to raise awareness that these conditions are common in ME/CFS, that could be useful.

I don't see these symptoms as been totally separate. The general advice for other conditions does not suit people with ME/CFS e.g. exercise more, train your bladder to hold more liquid, etc aren't suitable pieces of advice for me. So I would like specialists to know how to treat these conditions in people with ME/CFS.

As people such as the Phantom have pointed out, if one can get to the cause of the symptom/condition, that is very important. If one looks at what happens in the UK, when studying many conditions such as "Medically Unexplained Symptoms", they say finding the cause is not important and tends not to be looked at much. (The MRC also in its research strategy in 2003 said finding the cause of ME/CFS wasn't necessary -this was based on the belief that all that was required was rehabilitative strategies). Generally with MUS, one is told to "gradually behave as normal" - wow, I wonder why no patient ever thought of this.

As well as viruses being an underlying cause, IBS-type symptoms can be part of autonomic dysfunction, for example.

What all the other conditions really need to start doing is both (i) look for the underlying cause (which may mean looking for the underlying cause of ME/CFS) and (ii) subgrouping more. It is very frustrating that in Fibromyalgia for example, with regard to exercise advice, there is not much subgrouping - exercise recommended for everyone basically. This is one reason why I don't like to see CFS and FMS too closely connected.

I think research in lots of other conditions can be hampered if they don't recognise the ME/CFS patients within their cohorts. Maybe we can benefit from their research dollars.

ETA: I reckon quite a lot of the undiagnosed ME/CFS patients may be under other diagnoses. If they can be found, our movement will be stronger (more people and families to donate, fundraise, advocate, etc).