• 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.

Simon Wessley replies

Enid

Senior Member
Messages
3,309
Location
UK
There is a lot going in parliament - All party group Lords/Commons - now do you think my local MP bogged down with immigration problems UK has even the time. Back those already involved with ME and it's dire history our best way.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Who ? Where ? What ? If you are going to accuse posters here of something, at least have the courage to demonstrate what it is you are accusing people of and exactly who it is you consider to be guilty of these terrible heresies.

I think it would be overly-confrontational, and possibly against forum rules, to trawl through past posts, and quote examples.

So I made a general observation, based on my perception of some comments and discussions.

Judging by the number of 'likes' that my comment has received, I'm not the only person who has perceived some posts and discussions in this way.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Patients do not have the resources to disseminate the truth widely, and authoritatively, and as such, false information has been propagated as 'fact' by those in positions of authority, with patients seemingly powerless to change it.

A specific example is the Lancet 'commentary' that falsely states that there was "30% recovery rate" in the PACE Trial, when in fact, no "recovery" was reported in the PACE Trial paper, and the "response rate" was only 11% to 15%. (If only 15% of participants 'improved', then "30%" could not have 'recovered'.) The Lancet 'commentary' was absolutely an error, but the Lancet refuses to change it. Why?
(My bolding)

One possible reason for this is corporate management interference with editorial policy and science. I am about to blog on this, and it specifically is about The Lancet. These issues have been raised by a former editor of the wider publishing group of which The Lancet is a part.

On more general issues, I am glad to see the discussion is looking more at politics. It is however still focusing on government minimal response ... what they can get away with and how to make them do that much ... rather than what can be done to make them actually act of their own volition to meet their moral, ethical and legal responsibilities.

On the Countess of Mar the only relevance to her position as a Peer is that she has a louder voice. If she were a farmworker on a remote and forgotten island farm, then I would still applaud her efforts. If the Good Samaritan of Biblical legend had not acted to help when he saw an injustice (in the story, I have no knowledge of the historicity of this), we would be missing an important Christian parable. Was he elected? No. Was he representative of some relevant group? No. He was someone who saw an injustice, and saw someone who needed some help, and acted. We could all learn from that.

One of the things that is missing in this debate is a discussion of morality. Many in the UK establishment could easily be painted as immoral, they have set themselves up for it.

My research on this issues is ranging wide, though I hope to focus on more specific issues starting next year. I am having to read up on economics and UK and US constitutional law! These issues go beyond ME and head into failings in the practice of democracy itself. The government has a moral responsibility to act in the interest of the people. In many respects it has ethical and legal responsibilities too. Failure to do so is endemic, and across the western world its getting worse. Against this is a counter-force of real-world and online political activism, as well as a gradual and very slow shift to more accountable and transparent government.

Bye, Alex
 

user9876

Senior Member
Messages
4,556
IMO this is quite wrong, the majority of MPs will have been contacted at some time or another by consituents who have an M.E/CFS diagnosis, and who have sought help with benefits, housing etc. Additionally lots of us have been writing to our on MP, MSPs AMs etc for decades.

I'm sure most MPs have come across ME but I would be very suprised if they take much notice or follow what is happening. Remember many people come to MPs for help and write over many issues. Getting past the platitudes is difficult.

This concerns how politics works at the Party level and how Parliament works - although interconnected they are different. Party operatives will certainly notice anything that involves a member of the upper house, and in this case Mar will be marked accordingly (nutjob) and the association of her cause (M.E/CFS) will be logged in similar association. Faced with a choice between serious academic and nutty old Peeress - M.E/CFS gets shifted into "expert territory, politicians to keeps hands off ! " The asking of questions is classified by the various Government and Oppsition business managers relative to their selfish perspectives along the lines of - "helpful", "unhelpful", "damaging", or "bloody stupid and waste of all our times". Memories in Parliament are long.

I was thinking that just having someone ask questions matters. When I was a civil servant many years ago I got the impression that trying to be accurate mattered when a question crossed my area of work. Making officials notice and think a question may be asked might make them more careful. I think there is some interesting psychology in this area but its not comming to mind at the moment.

Politicians only fear those scandals that apply specifically to them - if there is no one person or Party to 'blame' then the scandal has little or no purchase. Even if one could construct a campaign which identified M.E/CFS patients as legitimate 'victims' (only children, mothers and heroes realistically have a chance to qualify) of scandal - who is there to 'blame', there's always the get out that science hasn't offered any option for intervention so what is that the Politicians should/could have done.
I think scandal is too strong a word for what I intended to say. Its about those in power being seen to have ignored something or being out of touch with the world. I don't think a strategy of blame is useful but a strategy of offering good rewarding positive options often works.

What potential for drug treatments ?

Rituximab possibly ampligen. I'm not convinced about antivirals.

The APPG is a potentially valuable line of communication, but Politicians need to have something on which to act, simply saying here's a problem isn't awful ? doesn't provide the average politician with anywhere to go. Asking for more money for research without some argument about why and how the existing research budgets should be 'cut up' differently is an argument without traction. Complaining about how previous budget allocations were spent, will not interest most politicians - their concern will be 'what now ?" As far as alerting current MPs - every constituent can write a basic letter with basic information - but unless we have some to ask our MP to do, then there is no chance of the MP, or MSP or AM acting on our behalf.

We could ask our MPs to fund a Rituximab trial. I think there are also issues of diagnosis, care and how people are treated. How about ensuring the equality act includes people with chronic illness.

How about some basic training for GPs.

I'm don't think letter writing to MPs really works unless its done on mass and written by individuals. There are so many different campaigns looking for attention. We need a way of capturing peoples, the media and MPs imaginations.
 

user9876

Senior Member
Messages
4,556
Have I missed the discussion of Wesselys latest reply

http://www.meactionuk.org.uk/Mar-Wessely-correspondence-update-171212.htm

From: Wessely, Simon
Sent: 15 December 2012 10:02
To: MAR, Countess
Subject: your letter.

Dear Lady Mar

Thank you for your last letter and the accompanying clarification. I am happy to confirm that I am in agreement that you may publish this correspondence where you see fit.

Now let me address the specific question that you ask. As a part of a programme of research over many years, colleagues and I have shown that perpetuating factors are different from those that trigger the illness. So, when you ask "do you still believe that ME/CFS is "perpetuated predominantly by dysfunctional beliefs and coping behaviours"? my answer is that I think the evidence is compelling that symptoms, disability and distress can indeed be perpetuated by what people believe about their illness and how they manage it. This is true of very many disorders, and says little about what causes illness, but about why some people improve more than others. Turning to CFS I say to patients that having this illness is like being given a certain hand of cards. With that hand, there are better and worse ways of playing the hand. What we can do is help you play that hand better. Continuing the analogy I often add that what we can't do at the moment is give you a new set of cards. And so I say that in my opinion as a researcher and clinician, either CBT or GET are the two ways in which we can currently help you. I share with them that these are currently the best treatments that we have, that they are not perfect, but are safe, and that if it was me, I would try one or the other, but of course it is their choice. This view says nothing about what causes the illness, but speaks to how we can best help patients improve their quality of life now.

In clinical practice I repeatedly see that this approach helps patients. Since there are no other treatments currently available that have been reliably and repeatedly shown to be both safe and effective, I think that opposing their use is unhelpful to patients and their families. And for avoidance of doubt, and mindful of the communication error with which we began this exchange, may I make it clear that I know that you are not one of those who have opposed making CBT available within the NHS to assist CFS sufferers improve their quality of life, and have indeed supported this. I do believe that this is an area in which there is indeed common ground between us. Likewise, your recent raising in the Upper House concerns about the clinical networks that were established by the last CMO in 2008 but whose future is now in doubt reflects similar concerns that are held by the vast majority of NHS clinicians working in this field and will no doubt be appreciated by patients and practitioners alike.

So this is what I tell patients about CBT and GET at the moment. Like any decent doctor, I will change my views and hence advice when the evidence changes - for example when a different treatment approach proves to be as safe but more effective than either CBT or GET , and indeed would be delighted to so.

Yours sincerely

Professor Simon Wessely
King's College London.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England

Thanks User. I hadn't seen that. Have been otherwise engaged of late. Well that clears things up rather nicely I would venture. Not that everyone will approve I don't suppose. A better reply that could have been envisaged and certainly predicted by some I should think.

Missed Lady Mar's subsequent reply (on the link above):

From: MAR, Countess
Sent: 17 December 2012 12:03
To: 'Wessely, Simon'
Subject: RE: your letter.

Dear Professor Wessely

Thank you for your letter of 15 December 2012.

I have read your letter several times and it is still not clear to me whether you believe that ME/CFS can be reversed fully by CBT or GET, as set out in the models described in the PACE trial, published in the Lancet in February 2011, or whether you consider them to be palliative interventions only, to be offered in the hope that they will increase functionality.

You may recall from the Lancet report:

CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue.

GET was done on the basis of deconditioning and exercise intolerance theories of chronic fatigue syndrome. These theories assume that the syndrome is perpetuated by reversible physiological changes of deconditioning and avoidance activity.

There is abundant evidence on the record that you did believe ME/CFS to be a somatoform disorder. Is this still the case?

I look forward to a definitive answer.

Yours sincerely
Mar
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
It sounds like he is on the back foot. If he truly believed that his theories help improve people's function than thats ok but why does he have an avoidance for the physiological abnormalities found in cfs/me like chronic infection, immune abnormalities that have been found, these abnormalities are closer to the cause of this illness. Wouldn't treating the illness be more appropriate then helping people to live in a crappy world??
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
It sounds like he is on the back foot. If he truly believed that his theories help improve people's function than thats ok but why does he have an avoidance for the physiological abnormalities found in cfs/me like chronic infection, immune abnormalities that have been found, these abnormalities are closer to the cause of this illness. Wouldn't treating the illness be more appropriate then helping people to live in a crappy world??

Early riser too Heaps? :) I wish they'd get some more effective sleep treatment. If they can pull that one from the latest e.g. MRC research then I'd be a happy bunny :)

Wessely, rightly, says that there is no effective treatment other than the two mentioned. He has never said - to my knowledge - that more research shouldn't be conducted. And - as I've said - the expert group (comprising White and Crawley) approved this latest direction in research at the MRC.

Even if e.g. a more appropriate and effective sleeping tablet was forthcoming - CBT and GET - would remain. I hadn't read Mar's reply before commenting above - missed it (should have checked the link that User supplied).

We know what Mar is trying to do. Wessely - as a psychiatrist - is trying to say that if one believes that ways in which a patient (any patient) manages their illness and thinks about their illness can lead to greater loss of quality of life - then to propose a model which essentially says 'we can help support you to overcome these unhelpful beliefs' is a good thing - for some people who perhaps need this support.

Inherent in this model of course is the need to suggest that unhelpful and limiting beliefs can be overcome or diminished. When specifying what these unhelpful and limiting beliefs might be - the risk of course is that people will (and have) said 'you are diminishing the reality of my condition and me!' If you or I for example, are clinging to the notion that nothing can help us move beyond where we are now except a biomedical cure and so we will sit here and suffer whilst demanding help - but only the help we deem appropriate - which is not available of course - this would be deemed unhelpful I suggest.

And let's be frank here. There were people clinging to the notion that they had a retrovirus and that the only help was treatment with antiretroviral drugs. Of course this is based solely on the internet - that great and dependable reflection of truth ;)

What Wessely and others do not I think adequately reflect is the degree to which these interventions are not proving to be effective or that they are not inherently limited themselves. Even for people who do want to engage with them, or indeed find them helpful, it is not a means to overcoming the condition itself. At least not for everyone by any means.

Personally, I still regard these as therapies - I know it might not make a difference in terminology - but to me they are not treatments for the condition itself.* Like any therapy the effect on the individual is, well, individual. For some - I have no doubt whatsoever - what is learned and how these therapies can and do help - is enough to help them to better enjoy life and even to e.g. return to some form of employment. It all depends on the individual and on the therapist and their professionalism and the way in which they can 'gel' with the patient etc.

But we can only find out if they will help us by 'sucking and seeing' for ourselves. For some they don't help. For some they don't help when first tried. It's down to the individual to decide when and if to try them out. As Wessely says - nobody is forced to do so.

Edit:
*Personally, I still regard these as therapies - I know it might not make a difference in terminology - but to me they are not treatments for the condition itself.

This is an unhelpful illness belief - probably. I need to work on that one obviously :rofl:


Edit:

...a cognitive–behavioral model has been proposed whereby primary MS disease factors trigger fatigue, which is then perpetuated or worsened by individuals’ cognitive, emotional and behavioral responses to the symptom [27]. Thus, breaking the vicious cycle of fatigue by modifying unhelpful cognitions (e.g., ‘this fatigue must mean I am having a relapse’) and behaviors (e.g., excessive rest and avoidance of activity) should help reduce fatigue. CBT has been effective in treating fatigue in other chronic conditions, including chronic fatigue syndrome (e.g., [6])...

CBT and MS Review 2010: http://www.ncbi.nlm.nih.gov/pubmed/20819010

I posted this on one of the other (many) threads surrounding this issue. It was my first 'hit' when looking for CBT and MS. That review does go on to look at the consideration being made to CBT and it's effectiveness in helping to modify the effects of the actual physical cause of MS i.e. the neurological cause. So, even if ME is found to have a definite neurological (or other) cause - as I said above - this will not automatically see the removal of CBT as a recommended therapy.

Further to the above - sorry - not everyone will of course be referred for CBT (or GET for that matter as in my own case). I suspect there are several reasons for this but one will definitely be that the referring physician and the patient simply feels they are not going to be appropriate or indeed useful. Who here doesn't feel they are managing as best they can? Maybe we are - maybe though - we are not.
 

user9876

Senior Member
Messages
4,556
Edit:



I posted this on one of the other (many) threads surrounding this issue. It was my first 'hit' when looking for CBT and MS. That review does go on to look at the consideration being made to CBT and it's effectiveness in helping to modify the effects of the actual physical cause of MS i.e. the neurological cause. So, even if ME is found to have a definite neurological (or other) cause - as I said above - this will not automatically see the removal of CBT as a recommended therapy.

Further to the above - sorry - not everyone will of course be referred for CBT (or GET for that matter as in my own case). I suspect there are several reasons for this but one will definitely be that the referring physician and the patient simply feels they are not going to be appropriate or indeed useful. Who here doesn't feel they are managing as best they can? Maybe we are - maybe though - we are not.

I think they seem to be moving into MS with a biopsychosocial perspective claiming it is a cure as well.

Behavioral interventions in multiple sclerosis: a biopsychosocial perspective.

Heesen C, Köpke S, Kasper J, Poettgen J, Tallner A, Mohr DC, Gold SM.
Source

University Medical Center Hamburg-Eppendorf, Institute for Neuroimmunology and Clinical MS Research and Department of Neurology, Hamburg, Germany. heesen@uke.uni-hamburg.de
Abstract

Managing uncertainty is a major challenge associated with the diagnosis of multiple sclerosis (MS). In addition to physical symptoms, neuropsychiatric symptoms are highly prevalent in this disease. Depression in particular is more common in MS than in other chronic diseases. While substantial achievements have been made in the therapy of MS and an increasing number of immunomodulatory treatments are now available, the long-term benefits of these are still a matter of debate. Importantly, while the approved therapies show good efficacy on inflammatory lesions and relapse rate, and may slow certain aspects of disease progression, improvements in function have rarely been reported. On the other hand, behavioral interventions have recently been shown to significantly improve fatigue and depression as well as motor function. In addition, recent evidence suggests that group education or face-to-face behavioral interventions may decrease inflammatory disease activity (such as relapse rate or lesion formation measured by MRI). Therefore, behavioral interventions not only ameliorate symptoms but may have the potential to modify the disease process itself.
Also see
http://www.medscape.com/viewarticle/772589_3
 

user9876

Senior Member
Messages
4,556
We know what Mar is trying to do. Wessely - as a psychiatrist - is trying to say that if one believes that ways in which a patient (any patient) manages their illness and thinks about their illness can lead to greater loss of quality of life - then to propose a model which essentially says 'we can help support you to overcome these unhelpful beliefs' is a good thing - for some people who perhaps need this support.

.
If we were to take wessely's cards analogy I would have thought the most effective thing would be to have an ocupational therapist look at your activities of daily living and suggest adaptations and techniques to make them easier so that you minimised energy usage on those activities and could therefore do other stuff with your cards.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
If we were to take wessely's cards analogy I would have thought the most effective thing would be to have an ocupational therapist look at your activities of daily living and suggest adaptations and techniques to make them easier so that you minimised energy usage on those activities and could therefore do other stuff with your cards.

Yeah. That's part of it for sure. If you are let's say 'severe' or 'very severe' then a review by a relevant professional would result in aids and adaptations. What then? How do you better manage the condition itself in terms of the way you think about it?

I said about sleep above. Well there's nothing I can do about it. I haven't been able to stop the vivid dreams for example and have had to learn how to best respond to them along with the sleep disruption in general. No 'aid or adaptation' is going to help me to do this - or to learn to live with the fall-out from this aspect of the condition either.

But some of my - perfectly understandable - responses to this part of it can be and have been better managed - I like to think and some have been done by me without any specific intervention. For example, a shitty night does not prevent me from doing stuff during the day. I might want or feel a need to curl up in bed and justify this by 'another shitty night' but I don't - certainly not as a rule.

This response does not undermine my condition in the least. Neither does overcoming my previous inability to brush my teeth. Why should it? If there are things that I can learn about my own responses to this incapacity - then I want to learn them. As I said before - it is bloody hard to analyse let alone self-analyse - but I would suggest to you that we all do this anyway. It's just that with professional help and direction it can prove more useful.

Indeed I would suggest that we all are 'guilty' of way too much over-analysing at times. All this concern about psychological papers and such - it should come with a health warning. It does mess with your mind. Though realising that can and does help - rather a lot (if my own experience is anything to go by).

I used to get pissed off by these papers. The language they used did seem to undermine the genuine nature of my suffering and my claim of disability. Hell I used to feel bloody awful being cared for as I am by my parents after reading this stuff. But after engaging with e.g. those in the Cornwall ME Service - I have come to realise what I read in a paper is not undermining the condition or my disability at all.

Me is unique. Always has been. Because NICE only really recommend activity management, CBT and GET - we naturally feel that we are being afforded the bad hand in a card game. But reading the actual Guideline as I have done thoroughly and discussing it pretty thoroughly also - along with those actual treatments above (and including symptom management administered on an individual basis by a GP or specialist physician) - I don't feel ME is being undermined.

If Ampligen gets approval - I don't think it will but never mind that for now - if it does then not all patients who take the medicine will feel it has done them any good whatsoever. Some will feel it has. To what extent this might be down to some overcoming of the actual cause of ME - or perpetuation of it - we will never ever know. And yet patients who do feel they are able to 'do more' or 'return to work' will be convinced that Ampligen did it.

Why then is it different for those who feel that CBT and/or GET and/or Activity Management and/or prescribed symptom management pharmaceuticals - have had similar outcomes? Dos it really matter to the individual concerned? I doubt it very much and yet it seems to matter a great deal to those who are adamant that CBT and GET have no place whatsoever in an overall treatment programme for ME.
 
Messages
15,786
I said about sleep above. Well there's nothing I can do about it. I haven't been able to stop the vivid dreams for example and have had to learn how to best respond to them along with the sleep disruption in general. No 'aid or adaptation' is going to help me to do this - or to learn to live with the fall-out from this aspect of the condition either.

Wrong. There are -causes- to sleep problems, and in many cases there are relatively simple fixes to go with them.

I think the general attitude of "there's nothing I can do to fix it" is completely incorrect, and it seems to be stopping patients and doctors from looking much further than whatever the NICE guidelines say is helpful.
 

barbc56

Senior Member
Messages
3,657
I think the general attitude of "there's nothing I can do to fix it" is completely incorrect, and it seems to be stopping patients and doctors from looking much further than whatever the NICE guidelines say is helpful.
i

Some psychiatrist would say that CBT or some type of therapy would help that "attitude". Emphasis on may as there are physical limits within an illness. For example you wouldn't expect someone who has just had a heart attack to talk themselves into running a marathon. We have to be realistic. The opposite type of thinking, that there must be something more to help us has led some patients to use alternative medicine which may be harmful in themselves or harmful because the patient might forego getting appropriate treatment. It can also lead to doctor shopping.

As far as sleep goes there are conditions where there are not simple fixes because of the way the brain is wired. The one that comes to mind is narcolepsy. Restless legs syndrome is sometimes helped by medication but not for everyone. Sleep disruption or sleep seizures are also be difficult to treat as well as sleep walking and acting out dreams. I can't remember what that is called.:confused:

Speaking of sleep, I need to do just that as it's 5:00 AM and I can't fall asleep. Unfortunately, I sleep just fine during the day. :rolleyes:

Barb C.:>)
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Wrong. There are -causes- to sleep problems, and in many cases there are relatively simple fixes to go with them.

I think the general attitude of "there's nothing I can do to fix it" is completely incorrect, and it seems to be stopping patients and doctors from looking much further than whatever the NICE guidelines say is helpful.

As Barb said. But I'm always interested to hear about other treatments that I might not have encountered despite engaging with any and all practitioners I have been referred to. Sleep dysfunction including vivid dreams remains an integral part of the chronic phase of ME. The research being undertaken by the MRC funded study is the first that I know of which will look specifically for a drug treatment.

Other measures I take do involve more than a low dose of over the counter sleep aid - of which my doctor for example is fully aware - but they are simple measures and one of which is to 'get up'. Generally, when in the past I had problems maintaining sleep, I would 'toss and turn' in my bed determined to get back to sleep. I would become distressed over time. And angry.

I don't do this anymore and the other measures as well as the Sominex - help me to get more than 1-2 hours at a time. Not always but sometimes. Nothing has prevented the vivid dreams or the sleep paralysis or indeed the 'fitting' that may or may not be connected (I do have an Epilepsy diagnosis). So if you'd let me know what it is you think might additionally help I'd be obliged - because this hasn't changed (except during acute phases perhaps when I oversleep) for my 15 years. Thanks.
 
Messages
15,786
I don't do this anymore and the other measures as well as the Sominex - help me to get more than 1-2 hours at a time. Not always but sometimes. Nothing has prevented the vivid dreams or the sleep paralysis or indeed the 'fitting' that may or may not be connected (I do have an Epilepsy diagnosis). So if you'd let me know what it is you think might additionally help I'd be obliged - because this hasn't changed (except during acute phases perhaps when I oversleep) for my 15 years. Thanks.

Have your glutamate levels ever been tested? Or your other neurotransmitters?
 

snowathlete

Senior Member
Messages
5,374
Location
UK
"And so I say that in my opinion as a researcher and clinician, either CBT or GET are the two ways in which we can currently help you. I share with them that these are currently the best treatments that we have, that they are not perfect, but are safe"

To use his card analogy, GET is the JOKER in the pack.
I have experienced it first hand and I can state categorically that it is absolutely not safe for everyone. Perhaps not for most. It made me very ill, very quickly and for a very long time and I have heard others state that they had the same experience as me.
 
Messages
15,786
To use his card analogy, GET is the JOKER in the pack.
I have experienced it first hand and I can state categorically that it is absolutely not safe for everyone. Perhaps not for most. It made me very ill, very quickly and for a very long time and I have heard others state that they had the same experience as me.

I think this is a very good point.

Something else that we should keep in mind is that when Wessely and NICE and others advocate the use of CBT for treatment in ME, the studies they use to support their assertions do not involve coping-CBT: they're talking about false-illness-belief-CBT.
 

Seven7

Seven
Messages
3,444
Location
USA
Why then is it different for those who feel that CBT and/or GET and/or Activity Management and/or prescribed symptom management pharmaceuticals - have had similar outcomes? Dos it really matter to the individual concerned? I doubt it very much and yet it seems to matter a great deal to those who are adamant that CBT and GET have no place whatsoever in an overall treatment programme for ME.

I respect your opinion. This rant is based on my experience and my frustrations on the topic.

Here is my problem with it all, It works some, when I reduce my activity and PACE, sure my symptoms are reduced and I feel better. Unfortunately, for me not to have much symptoms (some symptoms I cannot avoid no matter how much I rest) basically all I can do in a day is get a shower and just stand up to eat and stretching, and with luck a 5min walk.

But the question is, is it practical. HELL NO!!! Who is gonna pay my bills while I "pace myself" that is where the issue comes PUT THE MONEY WHERE YOUR MOUTH IS. Then can I get disability while I "PACE"?!?! I already tried that, and It was a hassle for the insurance to recognize PACE and let me take the time off I needed. I was unable to be vertical due to POTs, I had medical records and an exercise test done proving my inability and I had to go back to work because the insurance THAT I PRIVATELY pay suspended the benefits. So yeah I have a problem with Unsustainable or unachievable solutions.