BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

[Njsingleton]

My post is not aimed at @Njsingleton its aimed at quackery as a whole and how easy it is to buy into it.



Yes but my point is that all people have emotions and mental processes it doesnt mean to say that any given illness has those parts as contributory or causative. Those kinds of assumptions made by quack type doctors are damaging and so easy to buy into without actually taking a closer objective look at the claims made such doctors.



Just to clarify, my problem with this kind of statement is it can inadvertently imply that everyone requires or benefits from such dubious subjective "treatments", and that they have anymore benefit when delivered by a "professional" rather than the average person not requiring them and managing their disease perfectly fine without them.

I dont think its right to summarize it as my ME ...



Its fine though if someone wants to say that THEY required outside help with the emotional and mental aspects of a given situation but not qualify it to a given illness as a proportionate part of the illness itself.

That attitude is what will keep you ill. Seeking help and understanding of the psychological effects this illness brings on top of the nutritional and biological aspects is what is helping me to recover. You may not agree and that is absolutely fine, but you can't say that I am wrong.

 

[Large Donner]

That attitude is what will keep you ill. Seeking help and understanding of the psychological effects this illness brings on top of the nutritional and biological aspects is what is helping me to recover. You may not agree and that is absolutely fine, but you can't say that I am wrong.

Wow. True colours.

That attitude is what will keep you ill

So it's all attitude and denial that keeps us all ill here. Wow. How do you even know that my symptoms and cause are the same as yours. How do you know what biological treatments and dietary changes I have tried. Can you tell us why CBT and GET haven't worked despite 3 decades of being available is it the attitude of the patients that stop it working.

Hundreds of people on this forum alone have tried dietary changes and psychological therapy and it hasn't helped recover them at all, particularly psychological therapies.

Just for the purpose of clarity, do you think ME is a biopsychosocial illness.

 

[me/cfs 27931]

That attitude is what will keep you ill. Seeking help and understanding of the psychological effects this illness brings on top of the nutritional and biological aspects is what is helping me to recover. You may not agree and that is absolutely fine, but you can't say that I am wrong.

Well, if I'm not allowed, then I'll let the Institute of Medicine say it for me.

Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made.

Some health care providers have been skeptical about the serious physiological — rather than psychological — nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms.

https://www.ncbi.nlm.nih.gov/books/NBK274235/

 

[Hutan]

That attitude is what will keep you ill.

I don't want to get into an unproductive, personal argument here but I do want to respond to this.

Before my son, my daughter and I became ill, we were all perfectly normal, well-adjusted people with probably less past trauma and hardship in our lives than an average person of our various ages. We all became sick at the same time, a time that did not coincide with any particular emotional stressor.

The only psychological counselling any of us have had was the 11 sessions my son had with a psychologist to, we thought, help him cope with having a serious illness. It was she who encouraged him to go back to school full-time (and the physical demands of this caused him to become very sick). She also wrote a letter to our GP suggesting that he had conversion disorder and school phobia and recommending more psychological treatment when in fact prior to the illness he had had no problems with school and was doing very well academically and socially. And since the illness, he has done what he can to socialise and tries incredibly hard to get to his two school classes. He likes school very much.

Now, I don't know exactly what illness you have, and you don't know exactly what illness my family has. We have been diagnosed with all of ME/CFS, CFS and post viral fatigue. But until we have biomarkers, no one knows who has what, really.

And perhaps what you have is helped by various psychological approaches. Ours is not. So each to their own.

BUT, when someone says, 'you would get better if you examined your past for trauma, addressed repressed issues, thought more positively'... well, it's a short step from there to saying 'if you aren't going to undertake psychological treatment, then you only have yourself to blame for continuing to be sick'.

And it's another short step from there to saying, 'if you don't do this psychological treatment, then you don't deserve sickness benefits, or sympathy, or other sorts of help'.

It's also a logical conclusion that if an illness can be resolved with attention to nutrition and psychological factors, then there is no need to fund expensive studies into immunology or other possible underlying causes or pharmacological treatments.

That is why I have a big problem with statements along the lines of 'That attitude will keep you sick'.

 

[trishrhymes]

That attitude is what will keep you ill.

Please, Nicola be careful about saying things like this.

There is no objective scientific evidence that I have seen that psychological therapies effect the course of a physical illness.

They can certainly help some people feel more positive about their symptoms and cope with them better. Though my own personal experience with two different therapies was that for me they were worse than useless.

You cannot know for sure which of the many treatments you have used including the vitamins you are taking are actually changing your body's biological function.

Also you know nothing about the health of the person you are addressing, so should be very wary of telling them what is keeping them ill.

 

[Valentijn]

That attitude is what will keep you ill.

Attitudes do not cause or perpetuate disease. But blaming ill people for their diseases is what keeps from them from getting the treatment and assistance that they need. I am disgusted that anyone would say such a thing to sick people.

You may not agree and that is absolutely fine, but you can't say that I am wrong.

You are unequivocally wrong. If there were a mental or emotional component holding people with ME back from their cure, the dozens of CBT trials would have found it and remedied it. But those trials show that psychological therapies are a complete failure for ME patients.

These therapies do not help patients recover from ME. If you experienced recovery following similar therapies, you likely experienced a coincidental remission at the same time, or you are the victim of misdiagnosis. Your personal anecdote changes neither the scientific findings nor the definition of the disease.

 

[Njsingleton]

Wow. True colours.



So it's all attitude and denial that keeps us all ill here. Wow. How do you even know that my symptoms and cause are the same as yours. How do you know what biological treatments and dietary changes I have tried. Can you tell us why CBT and GET haven't worked despite 3 decades of being available is it the attitude of the patients that stop it working.

Hundreds of people on this forum alone have tried dietary changes and psychological therapy and it hasn't helped recover them at all, particularly psychological therapies.

Just for the purpose of clarity, do you think ME is a biopsychosocial illness.

Absolutely not-I was disagreeing with your attitude about me receiving psychological help to deal with a very real physical illness. I was commenting on your attitude alone. No one elses

 

[TiredSam]

That attitude is what will keep you ill.

That is a thoroughly offensive comment of Noel Edmunds proportions. Please google "patient blaming".

For the sake of balance I would like to say that throughout my 3.5 years of M.E. I have steadfastly maintained an attitude of angry, grumpy skepticism. I have made considerable improvements throughout that time. Although I am wary of claiming a causal link, in my less scientific moments I like to give myself a pat on the back for my curmudgeonliness, which I choose to believe has served me well, and which I would therefore wholeheartedly recommend to others on the basis of my n=1 experience. I have found Saturday morning rants especially helpful, plus a carefully maintained contempt for all types of quackery, woo, and dodgy claims generally. As I said, I feel better than I did 3.5 years ago, so that proves it.

@Njsingleton I wouldn't dream of saying that your refusal to adopt my attitude is what's keeping you ill (you still have CFS don't you?), that would be appallingly arrogant and offensive. It's just what I choose to believe has worked for me, but I also accept that a positive, happy person with an sunny, optimistic outlook on life may have experienced similar improvements over the same time period.

When healthy people learn how to manage their emotions better, adopt a different attitude to certain situations, see things differently etc, ie basically learn how deal with life better (which is a continuous journey we are all on, healthy or otherwise) and find that their sense of well-being improves, they can't claim that their illness has improved, because they don't have one. But if the same person happens to be ill, suddenly it's an improvement in their illness. Well I find such a claim to be well dodgy, especially when made in the context of such a poorly understood fluctuating illness as ours (poorly understood fluctuating illnesses seem to be the perfect target for such claims, by sheer coincidence).

Oh, and welcome to the forum .

 

[Njsingleton]

Please, Nicola be careful about saying things like this.

There is no objective scientific evidence that I have seen that psychological therapies effect the course of a physical illness.

They can certainly help some people feel more positive about their symptoms and cope with them better. Though my own personal experience with two different therapies was that for me they were worse than useless.

You cannot know for sure which of the many treatments you have used including the vitamins you are taking are actually changing your body's biological function.

Also you know nothing about the health of the person you are addressing, so should be very wary of telling them what is keeping them ill.

Trisha this was meant for one person alone. I resented that to be honest about seeking psychological support was seen as something to be ashamed of. I absolutely 100% agree that we are all different and deal with our illnesses in our own unique way. I have never ridiculed someone else's journey to recovery. I am fed up of feeling insulted by that one member.

How do I leave this site? I was hoping after being invited it would be a supportive group but since I joined I just feel heckled and I'm really not interested in that. Thanks for the invite but this isn't the place for me.

 

[Molly98]

That is a thoroughly offensive comment of Noel Edmunds proportions. Please google "patient blaming".

For the sake of balance I would like to say that throughout my 3.5 years of M.E. I have steadfastly maintained an attitude of angry, grumpy skepticism. I have made considerable improvements throughout that time. Although I am wary of claiming a causal link, in my less scientific moments I like to give myself a pat on the back for my curmudgeonliness, which I choose to believe has served me well, and which I would therefore wholeheartedly recommend to others on the basis of my n=1 experience. I have found Saturday morning rants especially helpful, plus a carefully maintained contempt for all types of quackery, woo, and dodgy claims generally. As I said, I feel better than I did 3.5 years ago, so that proves it.

@Njsingleton I wouldn't dream of saying that your refusal to adopt my attitude is what's keeping you ill (you still have CFS don't you?), that would be appallingly arrogant and offensive. It's just what I choose to believe has worked for me, but I also accept that a positive, happy person with an sunny, optimistic outlook on life may have experienced similar improvements over the same time period.

When healthy people learn how to manage their emotions better, adopt a different attitude to certain situations, see things differently etc, ie basically learn how deal with life better (which is a continuous journey we are all on, healthy or otherwise) and find that their sense of well-being improves, they can't claim that their illness has improved, because they don't have one. But if the same person happens to be ill, suddenly it's an improvement in their illness. Well I find such a claim to be well dodgy, especially when made in the context of such a poorly understood fluctuating illness as ours (poorly understood fluctuating illnesses seem to be the perfect target for such claims, by sheer coincidence).

Oh, and welcome to the forum .

Brilliant @TiredSam you have made my day with this post, love it.
I have never thought of it that way, but it is completely true.
perhaps a trial of following grumpy arse , critical ME patients with a bad attitude over a period of time should be next in line for a clinical trial, to see how improvements compare with CBT, GET and the lightening process.

 

[A.B.]

That attitude is what will keep you ill. Seeking help and understanding of the psychological effects this illness brings on top of the nutritional and biological aspects is what is helping me to recover. You may not agree and that is absolutely fine, but you can't say that I am wrong.

"you can't say that I am wrong" is a strong statement. Can you provide evidence that supports it?

 

[Undisclosed]

Trisha this was meant for one person alone. I resented that to be honest about seeking psychological support was seen as something to be ashamed of. I absolutely 100% agree that we are all different and deal with our illnesses in our own unique way. I have never ridiculed someone else's journey to recovery. I am fed up of feeling insulted by that one member.

How do I leave this site? I was hoping after being invited it would be a supportive group but since I joined I just feel heckled and I'm really not interested in that. Thanks for the invite but this isn't the place for me.

@Njsingleton So you are fed up by one member. Is that a reason to leave when there are tons of other positives here. We have an 'Ignore' button that can be used on members that you want to disappear. I would suggest using it and you won't see them again. This is a supportive website. If you feel attacked, use the report button and the mods will deal with it.

And will everybody please remember that it's easy to read meaning into posts that may or may not be there because this is the internet and it's easy to misconstrue statements. Be gentle.

 

[Molly98]

Trisha this was meant for one person alone. I resented that to be honest about seeking psychological support was seen as something to be ashamed of. I absolutely 100% agree that we are all different and deal with our illnesses in our own unique way. I have never ridiculed someone else's journey to recovery. I am fed up of feeling insulted by that one member.

How do I leave this site? I was hoping after being invited it would be a supportive group but since I joined I just feel heckled and I'm really not interested in that. Thanks for the invite but this isn't the place for me.

So sorry Nicola that you feel this way and feel heckled rather than welcomed, I think we have hit each others sore points here at the start. ( I mean the community ).

There is absolutely nothing wrong or shameful regarding seeking psychological help, I think what people disagree with quite strongly here is the idea that it reverses the disease process in any way because there is no evidence for it, or that it contributes to the disease process in ME.

As individuals, we may well have psychological difficulties which may be helped with psychological therapies and this in turn may help our well-being as it would someone without ME, but this is different to the disease process.

I can understand that mindfulness and relaxation techniques can help to soothe or calm the sympathetic nervous system so can be helpful management techniques for some people with ME, in the same way pacing is a helpful management technique, but I think what people are saying here is that they don't change the disease process or cure ME.

I personally have had years of psychotherapy and practised years of mindfulness and relaxation techniques and yoga and perhaps they have helped with management but I have still deteriorated over time and now I am mostly home bound and use a wheelchair.

I am glad though that the things that you have tried and have had help with have helped you and that you are feeling better, that is really a good thing. very best wishes

 

[trishrhymes]

Trisha this was meant for one person alone. I resented that to be honest about seeking psychological support was seen as something to be ashamed of. I absolutely 100% agree that we are all different and deal with our illnesses in our own unique way. I have never ridiculed someone else's journey to recovery. I am fed up of feeling insulted by that one member.

How do I leave this site? I was hoping after being invited it would be a supportive group but since I joined I just feel heckled and I'm really not interested in that. Thanks for the invite but this isn't the place for me.

Hi Nicola, I'm sorry this venture into the PR world has turned out to be upsetting for you. I did not realise when I suggested on the MEA facebook page that you might be interested in joining that you were so fully convinced by the Optimum Health people that their psychological approach was the major factor in your continuing improvement.

Nor did I realise that you would make a rash statement like 'that attitude is what keeps you ill', which is the sort of thing we are aware that the OH people promote with their clients, but which is unfounded scientifically, and can be deeply hurtful to the person to whom it is addressed, and by implication to the rest of us.

As you have seen, many people here have tried the psychological route and found that, while it may have helped with coping, it has had no long term impact on their physical health. I suspect it is too early to tell in your case just how much it will help you in the long run, but I am pleased for you that you are finding it helpful at the moment.

One problem with the Optimum Health approach is that if people, having gone through their therapy, do not get better, or indeed find their symptoms worsening over time, they are left feeling that they have not tried hard enough, that it is their fault that they have not got better. So not only are they left sicker than before, but they are left feeling it is their own fault. Untrue, but profoundly distressing. I hope this doesn't happen to you. This judgement can also spill over into judging others who don't get better as not trying hard enough, or not wanting to get better.

No one here has shown any ill will towards you, we all hope you continue on your journey of improvement, and find continuing help from the path you are following. What we object to strongly is anyone who implies or states outright as you did, that by not following that same path we are not trying to get better.

I can see, given the stage you are at on your journey with ME, this might not be the place for you. I am sorry about this, as I and many others find this an inspiring, friendly, helpful and informative group, all determined to find a way to improve our health, using the best evidence based science.

I wish you well, whatever you decide to do.

 

[MEMum]

Hi @Njsingleton

Thank you for your bravery in participating in the TV programme and commenting on FB and here.
This forum is a mix of providing info, support, light relief and a space to rant to someone who might understand.
I am sorry that you seem to have mainly only encountered the rant mode so far.

There have been times when my opinions or comments have been challenged/disagreed with etc and I've found it best to leave that thread for a bit, rather than feel I have to defend my views.

As my username suggests I do not have ME, my daughter does.

I do however have a spinal deformity which deteriorated suddenly over 20 years ago and am unable to stand or walk for long without a walker. I therefore have to pace my activities a great deal and understand the frustrations of greatly reduced physical activities.

However I have not experienced the disbelief and skepticism that I don't have a REAL medical problem, myself by doctors etc. In fact comments such as "that looks horrendous", (on my first visit to the Royal National Orthopaedic Hospital Consultant) on viewing my Xrays: or "she can walk quite well" from a more recent orthopod visit. To be fair he had previously only seen me in great pain, kneeling on the floor, trying to stretch myself over a chair in the X-ray dept.

Anyway enough (or probably too much) of my medical history.

I totally agree with you that there are biological/emotional/social/psychological aspects to all illness etc.
If I hadn't expected so much of myself when the back got bad I'd have probably coped better.

Being realistic about what I could or couldn't do would have been less stressful.

Like people with ME or others, suddenly being forced to do less was hard to accept.

It took me about 18 years to accept that it was looking unlikely that my health would allow me to hold down, even a part-time paid job. This does not mean I have given up and if anyone hears about trials on replacement spines let me know.

If I had been able to access appropriate counselling etc early on I think that my family and I would have suffered less.

I do understand your reaction of "Get me out of here" and would not be surprised if we don't hear from you again. Sorry

 

[Large Donner]

Absolutely not-I was disagreeing with your attitude about me receiving psychological help to deal with a very real physical illness. I was commenting on your attitude alone. No one elses

I have no issue with you receiving psychological help and I never stated so anywhere infact i implicitly said it was perfectly ok to do so if a person required it for themselves.

Lets be clear here this is exaclty what you said....

For me ME/CFS is a multi factorial issue, its mental, emotional, physical and biological and to fully recover it all needs sorting

...and that statement is clearly challengeable as it implies that mental and emotional issues are actually part of the cause of the disease rather than a consequence and also you clearly state that a full recovery can be made by addressing them for which there is zero evidence.

You then went on to make this unsavory statement.....

That attitude is what will keep you ill.

....which has nothing to do with "my attitude about you receiving psychological help".... It is not the help you received I commented on its the claims you made about what certain parts of that help (psychological therapy) does in relation to a biological disease.

You also made this comment.....

Seeking help and understanding of the psychological effects this illness brings on top of the nutritional and biological aspects is what is helping me to recover.

...which is questionable objectively and its perfectly reasonable that PWME should take issue with it in terms of claiming that seeking help and understanding of the "psychological effects" this illness brings is one of the parts that is helping you recover from ME.

Seeking help from a doctor over the biological issues of a ME was not something I had any issue with here and as stated now numerous times I never claimed to have any issues with people seeking psychological help for situational issues.

I also took issue with you assuming that I am ill because I have or haven't tried any of the treatments you have named here without you knowing anything about my illness and that it had anything to do with "my attitude".

 

[garcia]

I thought readers of this thread might be interested in the following article. Mindfulness and Meditation are increasingly being hyped as cure-alls by the media. What people may not know is that far from being harmless, they can have unexpected and nasty side-effects, for some even resulting in death. Still probably not as dangerous as eating a doner kebab, but nevertheless worth being aware of the risks:

https://health.spectator.co.uk/what-mindfulness-gurus-dont-tell-you-meditation-has-a-dark-side/

 

[NelliePledge]

hi @Njsingleton this forum does take a bit of getting used to due to the level of scientific and political debate and discussion around ME which while there is some of this on Facebook I think PR is on a different level. There are a lot of people from around the world who have years of experience of living with the illness and discussing developments here. there's a lot we can all learn from each other's experience sometimes there are misunderstandings miscommunications Inevitable with such a diverse group. Sometimes we push each other's buttons it isn't surprising - everyone is dealing with this illness and not always going to be diplomatic or unemotional in responses. 12 months ago I thought this forum wasn't for me either. I hope even if it isn't for a while you give it another try.

 

[trishrhymes]

I thought readers of this thread might be interested in the following article. Mindfulness and Meditation are increasingly being hyped as cure-alls by the media. What people may not know is that far from being harmless, they can have unexpected and nasty side-effects, for some even resulting in death. Still probably not as dangerous as eating a doner kebab, but nevertheless worth being aware of the risks:

https://health.spectator.co.uk/what-mindfulness-gurus-dont-tell-you-meditation-has-a-dark-side/

Probably worth a thread of its own. Do you want to start one, if you haven't already? I'd be interested in a discussion but don't want to derail this thread.

 

[Snow Leopard]

Just for the purpose of clarity, do you think ME is a biopsychosocial illness.

ME is definitely a biopsychosocial illness. This isn't the same as thinking that psychological therapies can make us all better.

(psychological therapies including graded exercise have consistently failed to demonstrate benefit in terms of -returning to work - increasing activity levels - increasing exercise capacity -reversing neuropsychological testing defects. They have demonstrated benefit only on short term self report questionnaires, consistent with placebo effect and other biases such as social desirability, participation bias etc). It sounds like Nicola still has her illness (the big improvements they promise didn't happen) and I predict it will take a year or two for her to realise how little the OHC actually did for her.

Some of us have tried all sorts of things, and thought they might be working at the time, when focusing on small changes (for me I even believed homeopathy for a time), it took more time and hindsight to realise they didn't work at all. This is why I don't tend to listen to anecdotal reports of improvement - unless someone went from moderately or severely ill to functional (eg working full time, and social life outside of work) and has a plausible story.