Chronic fatigue/ME

Thanks for your reply.  I have been feeling a lot better in the last few months, but now tend to forget and do more than I should.  I have been strict with myself in the garden, and set my mobile alarm to remind me to stop after a certain time. It is difficult when I am enjoying something to remember that although I can do it at the time, it can drain too much energy if I am not carefull.  I will try to have more patience.  I am thankful that I can do so much more than in the last two years.  But still get frustrated at times that I cannot go at life as I used to.  I constantly kick the gremlin off my shoulder that tries to convince me that I will never be able to do again. 

Flowerpot lady's reply looks interesting . Worth looking into. As the OT says if you pace you will get back to 80 percent of what u were before. But you have to stop yo yo ing . If u can level out u gradually increase stable energy levels.  She has given my hubby cognitive behaviour therapy on saying no to yourself and others . Very interesting . Habits we have where we feel we have to not let others down or not stop because we want to ... You will recover but takes self discipline ... Worth it though ... 

Glad the Cognitive B T helps with saying no. Have been unsure about this apporach, but then I haven't tried it. It is really difficult saying no when you are at work even though you know you are already overdoing it. I work in a FE college, and have a few weeks off over the summer, so am hoping to get myself into pacing before we go back.

"As the OT says if you pace you will get back to 80 percent of what u were before."

I'm not aware of any evidence that supports this claim. Unfortunately, a lot of the people making money from CBT and GET have shown themselves to be rather untrustworthy, and can end up really misleading patients. Best of luck with whatever helps, but I'd be really interested to know how they justify making a claim like that.

Hi that was the OT s assessment of my hubby. She is attached to the m.e. Clinic in my local nhs hospital. So no money involved. She visits my hubby at home every 4 weeks and totally tailors his treatment to him. So it is very individual . So far she has given him things to change to help him sleep. Relaxation techniques and BCT. But he was first seen by the m.e. Specialist in the clinic who also wrote that he had a good chance of making a full recovery. And she then referred him to the OT. I think every case is individual. But it is recoverable the specialist did explain that . But it's stopping the cycle of yo yo ing. Which can go on for years. 

Every case is different I found the causes of CFS/m.e. Fascinating when we saw the specialist. Car crashes, trauma, open heart surgery, virus, prolonged stress, childhood prolonged stress etc..a virus of some kind was always the trigger she explained but your life history would show some kind of stress...and you way of coping was not to give in.to push to fight to conquer...that's why the BCT is vital to accept you can't fight it you have to respect your bodies broken and needs to heal and working with it it will. Not doing the same things or thought processes you've done before. 

Anyway I hope it works as he has had CFS for 4 years can't work can't play sport can't socialize like before the list goes on . He is always fatigued but did start to recover last summer and wasn't under ots then and he got a job and then relapsed... Too much too soon. So so hard to be patient and pace ...I hope you recover soon .. It's the most frustrating illness .. Sympathy 

 

Thanks Sally.

It would be really interesting to get more info on how they felt able to make claims about having "a good chance of making a full recovery", and things like that. Hopefully they do have good reason for believing that, but unfortunately, there is quite a lot of unpleasent manipulation around CFS, and many doctors believe that patient with CFS do not deserve to be spoken to honestly. There was a large trial assessing CBT recently, and those making money from CBT ended up spinning results so that patients could be classed as 'recovered' even if they reported higher levels of disability than when they entered the trial, and the researchers invbolved are refusing the release the results for the recovery criteria which they had originally promised to release, before they saw how poor their treatments were: https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po

The approach to CBT for CFS that has been assessed in trials is founded upon "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. The aim of

treatment was to change the behavioural and cognitive

factors assumed to be responsible for perpetuation of the

participant’s symptoms and disability."

If the CBT approach being given to you is presented as being about respecting that your body is broken and needs to heal, then either they are misleading you, or else they are taking an experimental approach to CBT without informing you.

Also, I'm not aware of any evidence that CFS patients are more likely to engage in boom and bust behaviour than anyone else - there was a trial recently which indicated that they were not, despite this having long been used as an excuse for letting doctors develop 'activity plans' and the like.

"So no money involved."

A lot of them are making quite a lot from the NHS and elsewhere, even if patients tend not to think it's worth paying for them directly.

Feel free to ignore all this if you like, and I don't mean to impose myself, but I lost many years of my life to trusting my doctors, and it was only when I really took the time to look at the evidence myself that I realised how untrsutworthy and manipulative what they were saying was. Good luck.

I haven't got CFS and I can only imagine how awful it is. 

My personal opinion is they haven't got a clue. And one day they will discover they have labelled quite a few illnesses as CFS. And what causes it and how to cure it. Right now heal thy self. 

As there is such a spectrum of symptoms. 

My first husband had m.e. 7 long years bedridden at first for a whole year then improved at snail pace he had no help but made a full recovery and then left me . Life  he is still ok . 

my hubby now got CFS symptoms 4 years ago and fought it was determined it couldn't be CFS as he didn't want me to have to deal with it again but after 2 years he accepted it was CFS but only a year ago did he agree to go to a specialist as he was still trying to not have it . 

I do joke my blood should be checked in case I am a carrier... 

But seriously I know my hubby will recover and I don't think it matters what you do I think your body just heals after years. 

Everyone has a different remedy they were doing when they recovered. But coping with the wait being able to endure the illness is the tough part. And this OT is giving my hubby practical tips and positive prognosis . He is happier and not as worried and I know from experience he will pull out of it might take a few more years but it will happen. And for you to .. Just don't waste money on miracle cures ... From green slime to ice baths or a metal rod you squeeze and it detects allergies charlatans .... Who fleece the sick.

lol whatever next ? 

 

"My personal opinion is they haven't got a clue. And one day they will discover they have labelled quite a few illnesses as CFS."

I think you're probably right.

It does bug me that a lot of people are able to make money from claiming to be experts, and telling patients what to do, when they base their claims on such poor evidence.

Also, while it is possible to be too negative about prognosis, it's also easy to be too positive. Lots of people seem to not get better, and a review of long-term follow ups (which did include many studies with a follow-up of only a few years) found an average recovery rate of 5%. I think that I was misled by false reassurances, and made some deeply inappropriate decisions because I expected to recovery. Still - there are certainly people who report being ill for years and then recovering, so it's certainly worth hoping for the best. Best of luck to you and your husband.

I would have to agree with you. If I need to take CBT for a couple of years, just to learn to say no or acknowledge that my glass is half full and not half empty, then it would be wasted money on my part. I have heard of people trying light therapy and everything else. Sorry I am skeptical. I have been getting better myself, just with proper rest, short walks, VIt D and a probiotic. Good luck to all who try anything that helps them.

Thanks for this post.  I have googled him and already found understanding in what he is saying.  It would good to hear that I was not the only one daft enough to keep on fighting through at first, until I just couldn't .  Will have to listn  in short stints as I get tired easily when trying to take in loads of information at once. 

does anyone else have the cognitive impairment when tired.

OOOh yes! Can't think straight, can't see straight, usually can't walk straight, either!

I have joined up to Toby Morrison's emails too, but will leave it till tomorrow to look more closely at his website - cheers, flowerpot lady.

 

Hey you're welcome :-) He's the only guy with a treatment programme where I have thought - yes, this is it. Lots of treatment programmes out there, but he seems genuinely wanting to help other people xx 

 

I kept thinking - any minute now he is going to ask me for money...

I am going to try the local NHS service too, have emailed them today, but the NICE guidelines say CBT and GET are the preferred options - not sure about that. I went along to a local CFS/ME support group too, but last time I was the ONLY person to turn up apart from the facilitator!

 

Hi Jean :-) I had already been to a NHS CFS clinic group which discusses pacing.(The staff are not CFS/M.E. specialists-none exist as yet in the NHS).The staff running the programme were x1 physiotherapist and x1 Occupational Therapist.... however.... 3 months afterwards I was still struggling to pace- it wasnt motivational at all. Hence, it was a blessing to find Toby Morrison, in that he has had this awful illness, has recovered and is a great coach :-) xx 

It sounds familiar,  had to drop out of the discussions yesterday, I had not rested in the afternoon and was just about to crash.  I don't last much beyond 9pm on the good days.   I am trying to return to do a limited amount of work, but at the moment unsure of what level. 

I too am  wondering whether there will be a request for money from Toby somewhere down the line.  So many other sites I have been to do this.

but I will continue for the moment to read his postings. 

Hi Pat, I can tell you what I have paid - 50p (yes really) for his PDF/ebook- at first- all his knowldege over last 10 years- which got me started and now £24.99 for his recovery DVD. He does an online course, which I dont kow the cost of, but I'm going to see if the DVD is enough for me to do first. Its totally your choice whether you want to pay or not. Lots of his videos for free on youtube anyhow xx