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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.
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I think that having CFS and engaging seriously with the debate about it's nature is especially difficult. I often feel like I'm trapped in a first year philosophy dilema (How do we know what we know?) but unable to take the usual dismissive and pragmatic way out because of the unknown cause of my illness. These emotional strains may well be best avoided, but I find myself drawn to the arguments because I'm interested in the truth and genuinely uncertain as to what that may be.
I don't think any of us would challenge your courage in doing so! You've definitely got Chutzpah!Generally, I'm willing to impose my doubt upon others
As a matter of fact, we do. I reserve the right to express my dismay at a topic that I believe to be manipulative. And I think youve seen here that we will stand up to any argument or debate that has a flimsy foundation in science and is emotionally disturbing for seriously ill patients with a devastating neuro-immune disease. It is a testimony to the strength of this community that time after time we DO tag-team and address inequity, manipulation, or plain flimsy science when we see it.don't think we have a right to avoid arguments and debate.
I come here mainly for XMRV news... But I've never liked the idea of spending my time getting information from people with similar beliefs to me - doing so can make us soft (I think that's one of the problems with the psychologisers). I'm a bit of a lefty, but get my news mainly from Fox News, The Economist, Daily Dish and Daily Mail - I don't want to only read the views of those who I think 'get it'. A healthy forum needs a wide range of beliefs to be presented for examination and discussion. I think that some people here are far too willing to jump down the throats of those they see as heretical, while ignoring the errors made by those they see as being on the right side. I don't think this is healthy.
I really think you may be misinterpreting my posts. I'm sure there are some people who believe that any disagreement on these issues means I am for CBT or the Oxford definition. I am not for the Oxford Definition nor am I for CBT as an major treatment for CFS. I believe CBT was over represented in SPARKS and other treatments should have been given more prominence.
I entirely support you and others that are upset with a document that features CBT in a such a way that it appears to be the only treatment for CFS and I recognize that that kind of document will inevitably, whatever the packet says, lead some physicians to believe this is a pscychological disorder and will impair patients chances for adequate treatment.
[/QUOTE]CBT is here and its going to be here. My guess is that it'll be playing a more and more minor role in the treatment discussion I think the research community is realizing that it has definite limitations. Broad overviews of treatment studies are indicating that. In my overview of the Reno conference I noted that a CBT practitioner got up and said its been overhyped; she did not say it did not have some positive benefits for at least some patients.
I think the CFS community instead of wasting its time arguing that CBT does not help should spend its time arguing that it does not help ENOUGH. That we've spent 10 or 15 years studying it and we know its positive points and its negative points and its time to move on. That's the CAA's stance actually.
CBT needs to be put in the right context; a help that in no way results in a cure. The Sparks document doesn't say it does but it doesn't define its limitations within the overall context of disease severity well enough. That's my problem.
Basically we need more research into treatments that are more effective -that are really effective. That should be the focus, I believe, finding treatments that are really effective. The scientific community is not going to turn its back on CBT no matter how much patients scream. It can, however, modulate its approach and starting looking elsewhere.
When I see studies that do indicate some benefit I can't in all good conscience ignore them. All that means is that there is some benefit for some people. One overview said 40% and bear in mind that the benefit does not always need to be very large for it to be 'significant'. I think that's asking too much.
That's what I think we should focus on; that the benefits of CBT are not substantial enough, that we know what it can and cannot do, and that the research community should move on.
We should ask the CAA to illuminate more treatment areas - which they did with their physician education program they created with Dr. Bateman. I do not believe we should take them to task for mentioning whatever benefits CBT or other behavioral therapies ( and the energy envelope approach is ENTIRELY a behaviorally therapy) can bring. We can ask them to not feature it prominently - for sure.
I believe treatments such as these can very significantly help a small percentage of people, help somewhat (10-20%) a large percentage of people, and not help at all a considerable percentage of people. I do not believe they are a cure for CFS.
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Mild stuff for this CBT practitioner but not for others. I understand your point. It can be dangerous in the wrong hands - something that should be noted - and have limited effects in good hands. Can we agree on that?There is no proven or reliable cure for CFS, and no drug has been developed specifically for this disorder. Because CFS remains poorly understood, many patients have problems finding good care. Overall, the recommended strategy for treatment includes a combination of the following:
- A healthy diet
- Antidepressant drugs in some cases, usually low-dose tricyclics
- Cognitive-behavioral therapy (CBT) and graded exercise for certain patients
- Medication
- Sleep management techniques
Cognitive-Behavioral Therapy
The Procedure. CBT is usually performed over 6 - 20 sessions, each lasting about an hour. Patients are also given homework, which usually includes keeping a diary and attempting tasks that they have avoided because of previous negative attitudes.
A typical cognitive therapy program may involve the following measures:
Keep a Diary. The patient is almost always asked to keep an energy diary, which can be a key component of CFS cognitive therapy. The diary serves as a general guide for setting limits and planning activities. The patient uses the diary to track any factors, such as a job or relationship, that may be making the fatigue worse or better. It is also used to track the times of day when energy levels are at their highest and lowest.
Adjust Schedule. The patient adjusts schedules to conform to energy peaks and valleys recorded in the diary. For instance, the patient may take a nap during low-energy times and plan important activities during high-energy times. Developing regular daily routines around probable energy spurts or drops may help establish a more predictable pattern.
Confront Negative or Discouraging Thoughts. Patients are taught to challenge and reverse negative beliefs (such as "I'm not good enough to control this disease, so I'm a total failure."), and to use coping statements ("Where is the evidence that I can control this disease?")
Be Flexible. Energy levels will most likely never be entirely predictable. Patients must be prepared to adapt to energy variations. Instead of taking a long nap, for instance, patients may need 5- to 10-minute rest periods every hour or more, possibly involving relaxation or meditation.
Set Limits. Limits are designed to keep both mental and physical stress within a manageable framework so that patients do not get discouraged by forcing themselves into situations in which they are likely to fail. For example, tasks are broken down into incremental steps and patients focus on one step at a time.
Prioritize. Patients learn to drop some of the less critical tasks or delegate them to others.
Manage Impaired Concentration. Patients seek out activities that are appealing, focus attention, and help increase alertness. They learn to request instructions given as concise, simple statements. External distractions, such as music or talking, are kept to a minimum.
Accept Relapses. Over-coping and accomplishing too much too soon can often cause a relapse of symptoms. Patients should respect these relapses and back off. They should not consider them a sign of treatment failure or personal failure.
Using both self-observation and specific tasks, patients gradually shift their fixed ideas that they are helpless against the fatigue that dominates their lives. They move to the perception that fatigue is only one negative experience among many positive ones.
Success Rates. One review of CFS trials reported that, of all therapies available to CFS patients, only cognitive behavioral therapy (CBT) and graded exercise showed conclusive benefits. CBT is effective at reducing the symptoms of fatigue compared with usual care, and it appears to be more effective than other psychological therapies. Although CBT doesn't bring patients completely back to normal, research has found that people who use the therapy have higher mental health scores, and are able to walk faster and with less fatigue than those who did not use CBT. - Whoopie Doo!!!Cognitive therapy may also be an effective treatment - a big no no. What is effectivefor adolescents with CFS. Young patients who received CBT have reported improvements in fatigue, functional status, and school attendance.
Not all studies support the benefits of cognitive therapy for CFS. It is important to note that different therapists may have different fundamental assumptions about CBT and may use different techniques. - YOUR point here. For instance, some therapists believe that CFS is a purely psychological problem and that patients must reject the notion of physical causes, abandon all reliance on assistive devices, and participate in challenging exercise programs. Other therapists do not attempt to change patients' underlying beliefs, but instead focus on helping patients conserve energy and better cope with the limitations of their illness. These are the ones I was thinking of - that I am more familiar with. When considering CBT, patients and their families must be aware of such important differences in therapists.
The power of the mind to improve or oppose health problems is significant, and treatments that promote a positive outlook are beneficial for any disease.
Mild stuff for this CBT practitioner but not for others. I understand your point. It can be dangerous in the wrong hands - something that should be noted - and have limited effects in good hands. Can we agree on that?
You also stated, however that you"don't think we have a right to avoid arguments and debate." As a matter of fact, we do. I reserve the right to express my dismay at a topic that I believe to be manipulative. And I think you’ve seen here that we will stand up to any argument or debate that has a flimsy foundation in science – and is emotionally disturbing for seriously ill patients with a devastating neuro-immune disease. It is a testimony to the strength of this community that time after time we DO tag-team and address inequity, manipulation, or plain flimsy science when we see it.
At the end of the day, it boils down to this: the ability to distinguish gratuitous doubt
foisted on a vulnerable population, from genuine scientific enquiry.
:Retro wink:
Here's a report on CBT: it more fits in with my understanding of how its currently practiced at least in the US. Please do not get the idea from my posting it here that I think it in any way is a cure for CFS. I'm just trying to point out my understanding of how its practiced now is that enlightened practitioners use it to skillfully manage activity - not push through symptoms.
I DO NOT agree with several parts of this document. I agree that there are some awful preconceptions in it. I do not in any way support them; in fact there were so painful that I've removed several of them...They were eye-opening for me in their arrogance.....I've never actually seen CBT therapy described.
Mild stuff for this CBT practitioner but not for others. I understand your point. It can be dangerous in the wrong hands - something that should be noted - and have limited effects in good hands. Can we agree on that?
I don't know that ME/CFS is a complex neuro-immune disease. I'm not even sure what would be required to categorise it as such (and google was no help).