Cognitive behavioural therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME and provided to those who choose these approaches, because currently these are the interventions for which there is the clearest research evidence of benefit.
Research suggests that for some graded exercise will do more harm than good
I have not been offered any of these things though I am aware of them. I found light exercise does help and found the more frequently I workout the more I can do. Everyone is different though it could be my condition is just slightly less severe.
I think lots of sleep helps me too when I get the chance I can sleep 14 hrs which is a long time but I wake up refreshed and in less pain. It is even visible on my face I look more healthy after that though I know we should have more than 7 hrs sleep and shouldn't really sleep too much more than 9 hrs I find long rest helps me though I feel alot better while I have been off the last 3 days.
I feel I could do with cognitive therapy and would be interested in graded exercise therapy but don't know if it will go down well telling him what to do. Has anyone tried these therapies?
As Julia Newton said there were two distinct groups one where muscle function was close to normal, the second were on average producing twenty times normal lactic acid and were also experiencing difficulty removing this acid from the muscle.
Carrying out the tests with muscle cells in a laboratory removes the possibility of muscle conditioning or attitude to exercise having any influence on the results.
So for some light exercise will maintain muscle condition for others it will very damaging which is why proposing it is the best treatment for all is dangerous, with no known treatment for reversing any damage caused - If you can do no good first do no harm.
Graded exercise therapy
Graded exercise therapy (GET) is a structured exercise programme that aims to gradually increase how long you can carry out a physical activity. This will usually involve aerobic exercise (exercise that raises your heart rate) such as swimming or walking. You will have your own exercise programme adapted to your own physical capabilities.
GET should only be carried out by a trained specialist with experience in CFS and, if possible, should be offered on a one-to-one basis. After finding your 'baseline (what you can comfortably do already) in the exercise, you will gradually increase:
the length of time that you do the exercise
the exercise intensity
As part of your exercise programme, you and your therapist will set goals, such as being able to walk to the shops or carry out some gardening. It may take weeks, months or even years for you to achieve these goals, but it is very important that you do not exceed the exercise duration and intensity set for you.
Using the NICE guidelines it would be a matter of following those for the doctor that made the diagnosis not told what to do by your goodself.
The sleep problem is one of the recognised types from sleep studies where difficulty reaching the deep (REM) quality sleep is experienced. As with most things quantity is no substitute for quality with sleep a factor called sleep hygiene (more than brushing teeth before bed) involved in quality of sleep.
That is interesting because I wondered if my shoulder pain started after I went to the gym regularly for some of the summer taking it easy but did do alot on the rowing machine as it seemed most comfortable to really go for it. Since then a bone in my collar bone sticks out and I get muscle ache in my neck and shoulder now and again. One of my friends think the prolonged use of pain killers causes alot of aches. But nothing I can do about that as I could take go without them.
Like I said everyone is affected differently sounds though like I could have done some irreversible muscle damage too though :/ For months it felt like a ton of bricks on my shoulders.
A simple test is listening to your own body it will tell you much more than any test that researchers can run. How you feel 24 - 36 hours after exercise (post exertional malaise) is the best indicator of exercise tolerance and will help decide the level if any that helps maintain a quality of life that is acceptable.
Using pain killers - telling the body shut up when exercising will need more pain killers after if you still want the message subdued.
I did all of the I will shake this off thing, with the no pain no gain attitude that had me fitter than the average, only things got worse not better the harder I pushed.
Took me a while before I realised when you are in a hole stop digging was the way forward, it took time because I was so tired I could not think straight.
Weirdly I can manage cardio exercise but yoga is more of a strain I used to do it daily but my body shakes too much now as I do it. A yoga class was harder work than a gym session for me personally I found tai chi perfect though it made me wanna sleep lol for 3hrs after it.
Loved the cardio stuff did loads when I lived in Putney but the rowing core strength that gave me a resting pulse of 56 aged 40 is not much in evidence now. I miss the running because that was when I could do my clearest thinking without distractions, the loneliness of the long distance runner has given me some of the mental strength that is needed facing an uncertain future. The competition was always with myself if you can lift 100kgs then 105kgs is the next step and not that far away, now it's like trying to come back from an injury but something else breaks each time you try for that next step.
Patience control and flexibility are strong traits when living with this, some of my friends are still doing tai chi when they can as fluctuating conditions make a regular routine pointless. Listening to your body and working with it works much better than trying to beat it up then wonder why it wont play anymore.
Yeah definitely agree that it is like recovery from an injury also with not being able to do something one day but possibly being able to do it on a better day. It's tricky to know where the limit is for me sometimes especially remembering in the summer on a road trip with the family I climbed a large hill taking 2 hrs of climbing my uncle told us it was a nature trail so we expected a flat surfacef wee stroll. I did manage it though needed to nap after it. He was reminding me of that today I do find alot of the time I feel better after doing g something I didn't feel up to. I definitely pushed myself too far trying to be in at college everyday recently it's just impossible needed a week's rest. But gradually got back to exercise working slowly towards better fitness the first time being 15 mins 2nd time 20 then 3rd will be 30 on my next good day.
It's hard not to get impatient sometimes especially when trying to maintain fitness and control weight. But nowadays just do what I can I feel it best to keep moving even if it's only a gentle stretch I think it's important for me.
Can understand the difficulty in knowing the limit because it keeps moving this causes problems for others understanding how you are when not certain yourself.
The goal changes from as much as you can into enough with some time set aside after the event in case the limit was crossed as the reaction is generally 24 - 36 hours afterwards.
I absolutely agree that keep moving is important little and often is easier managed especially if trying to eat that way also because the energy from food often turns out less than expected.
Keeping hydrated becomes even more important as the normal balance is disturbed never without some bottled water now.
Oh I thought I was the only one who carried water everywhere Mostly due to a dry mouth with some medications I feel it is important to keep hydrated too. It does make you feel better. Had a day of it today had an hour gap between my nurses appointment and my doctors appointment and had to walk around the rain until I eventually sat on a damp bench ha Did not help having to walk home too. So sleepy and sore already.
The carrying water thing is just listening for what the body needs we do so much without thinking, sit down before you fall down our bodies try and save us from harm only sometimes we are late reading the signals or see them but push on anyway because of other priorities.
A life less ordinary finding how you can live with this.
Yeah it is best to listen to our bodies, so tired and sore just from going to a few appointments today. Glad I'm off until January 5th will be able to rest loads
Hi, I've been gone for a few days but good to see this study posted.
It begs the question when we have uk based research evidence such as this that objectively shows muscle abnormalities that have shown in labs to be potentially reversible if clinical trials can find an appropriate drug - why are the Medical Research Council not lapping up this important evidence and following it up with larger scale trials to expand on this finding and then open up the field for clinically important drug discoveries?
Why is the focus still on repeating trials of therapies shown in multiple stifies to at best be mildly effective and at work cause long term harm and disability in many cases?
Here we have clear evidence of something going wrong directly in the muscles of ME patients which blows psychological causation theories out of the water, and also provides objective biomedical scientifically evidence for why myalgic encephalomyelitis patients find graded exercise does more harm than good.
So why is graded exercise still being offered universally on the NHS?
I know that Tymes Trust, Countess of Mar, and ME Association have been chasing NICE for an enquiry into the guideline's appropriateness and the last I heard maybe a month ago was that the need for this has been acknowledged but NHS England have to be contacted to prompt an official NICE review. As far as I'm aware no update on this yet.
I am also aware that originally NICE guideline for 'CFS/ME' was listed under neuro and mental/behavioural. NICE responded to Countess of Mar and Tymes Trust request for it to be classified under ONLY neurological and to remove mental/behavioural because WHO classification compulsory. NICE then removed mental/behavioural which seemed to be a breakthrough.
BUT not long later, there was a backlash from NICE as they removed the guideline from the neuro listing as well!!!
This is now being chased again by Tymes Trust, thankfully!
The UK DOH and NICE are afraid of reality and admitting they were wrong and this is the key barrier to seriously I'll people getting useful clinical research and appropriate advice on managing the condition.
The around 4000 biomedical research study results showing multiple biomwdical abnormalities which together prove that ME is not only not psychological but a serious multi system disease have been ignored for far too many years.
This research comes from across the world.
But now we have biomedical research trials in the UK also showing abnormalities maybe they won't be able to ignore these so easily.
However workwise research evidence is validated in the UK for multiple other conditions so ME should be no different.
Hope everyone's not too bad and managing to have some rest ahead of Christmas!
NICE guidance was frozen in September 2014 with no further review for five years as opposed to the two years that is normal on the active list. The last review took place in 2009 so wait for hell freezing over before any change of opinion from NICE experts.
Was a bit worried how you were when you were away for a few days hope your managing before Christmas Starby
You may be surprised if u haven't already seen this...
ME Association October 2014:
''NICE guideline – over to NHS England | but swift action to correct their classification of ME/CFS | 18 October 2014
The Forward ME Group of charities held a meeting with Professor Mark Baker from NICE at the House of Lords on 25 June 2014.
The Minutes for this meeting can be found HERE.
At this meeting we were able to have a frank and robust discussion with Professor Baker. This covered the content and recommendations in the NICE guideline on ME/CFS, especially in relation to CBT, GET and Pacing.
Professor Baker was left in no doubt about our position: the current NICE guideline is not fit for purpose and NICE must produce a completely new guideline on this illness.
It was therefore very encouraging to find that Professor Baker accepted many of our criticisms and agreed that the 2007 guideline did need replacing.
Unfortunately, this is no longer a decision for NICE – the instruction to NICE to produce a new guideline on any disease now has to come from NHS England.
So the next step in our efforts to obtain a new NICE guideline on ME/CFS will be to meet with NHS England.
In the meantime the meeting with Professor Baker has given the ME/CFS charities in Forward ME the opportunity to raise other concerns about the NICE guideline.
This week the Tymes Trust – with whom the MEA works closely – asked the Countess of Mar if she would contact Professor Baker regarding the way in which NICE was listing CFS as a Mental Health and Behavioural Condition as well as being listed as a Neurological Condition
The Countess of Mar wrote to Professor Baker on Tuesday October 14 to point out that the Department of Health has consistently confirmed that they agree with the WHO ICD10 listing of ME as a neurological disease in G93:3 (with CFS being linked to this classification) and that WHO have stated quite clearly that no disease can appear under two separate categories
This resulted in a very swift response from Professor Baker and NICE.
By the end of the day CFS had been removed from the Mental Health section of the NICE website and the only listing for CFS (and ME) is now under neurological conditions:
They did remove the mental/behavioural category attached to the guideline in response to this and made it only listed under neuro.
But unfortunately as i said above they then removed the neuro listing too.
The MEA, Countess of Mar and Tymes Trust are now chasing this latest development, and i think are also still awaiting a response from NHS England about reviewing the NICE Guideline.
So there's a little bit of hope which is positive, although i won't be getting my hopes up much yet!
Working with the Neurological Alliance that have input for the Neurological SCN england.nhs.uk/ourwork/part... on keeping the neurological definition of ME.
The WHO ICD10 G93.3 classification was under threat at the last review with USA insurance companies pushing the CFS agenda so it would be under mental health, fortunately they were outnumbered as the UK & USA are in the minority for treating ME this way.
I didn't know about the Strategic Clinical Networks, that's really good that the nerological alliance are targeting ME there. Are any of the ME groups involved or have they been excluded?
I might write a separate post about WHO classification.
The US used to psychologise ME less than UK but the gap is narrowing as the US are currently proceeding with a Pathways to Prevention agenda for ME in the US which is dominated by psychology and ignoring and exclusion of biomedical evidence. (Sounds familiar!)
There is a very active campaign against it but sadly unless the noble opponents win, this will be bad news for ME patients in the US.
you are right that some other countries are better.
But some are worse, for example Denmark re-classified ME as 'bodily distress disorder'.
The SCN for neurological conditions was established with the rising numbers of Dementia cases making it a necessity that services were improved.
The Neurological Alliance neural.org.uk/ are an umbrella organisation for neurological conditions so we have a louder voice by networking than individual groups.
The American Pathways to Prevention was doomed by the people the NIH failed to appoint the patient advocates have fought long and hard against it but money shouts louder than reason as usual.
Yea, I know of the neurological alliance, I think they're a really goo organisation and the MEA works with them.
It's good as u say that the voice comes from wider groups as well.
I've noticed the NHS have put a lot into improving both inpatient and community dementia care, which is great, but they have only made cuts in areas of other neuro conditions, such as cuts to Specialist Nurse positions and closure of neuro rehab units etc.
Hopefully this will change but it's difficult to see how in times of vast NHS budget cuts how this will happen though.
It's important the right message keeps getting out to all the right people though.
i was really severely ill for a few days even by my standards (thought i may end up being in hosp for Christmas but so far thankfully i've avoided it) i've bounced back up a little bit now but still not good. i'm surviving!
Hope you're managing to reserve ur energy for Christmas and that ur OK too?
Hi, glad ur so far so good! Yea it's good ur pacing urself, it's worth it
I'm definitely not on the upward sadly but hoping I can at least survive Christmas without being admitted to hospital and hope I'll be well enough to spend at least some time with my family.
A bit worried as I have to meet the social worker tomorrow and anything like that normally causes a 2 wk crash at least, so it's the worst timing ever, but have to go ahead with it as need him to urgently push for getting my health care sorted out as the cuts to that are what's been making me deteriorate recently.
i was supposed to meet him today but too Ill but it's now rescheduled for tomorrow.
Nearly 2 years ago the local council cuts forced the social services into only caring for the bed bound and those unable to meet toileting needs, fluctuating conditions were ruled out unless the criteria were met at all times.
This close to Christmas I would put them back to next year after a chance of having some good memories with family and friends
Hi, unfortunately I fall into that category and have needed 24 hour care for years.
It's just that cos I have major health care needs as well as critical social care needs the CCG are involved as well. It's very complicated but the CCG cut down the health element of my care and this has caused me to deteriorate a lot as I was depending on the nursing care I was getting but they
It's a very complex situation but I have to meet the social worker as I'm getting critically ill due to the nursing care cuts and so although it's not social services' decision as they only deal with the social care elements of my needs, they will have to push the CCG to take some action to reinstate my nursing was it's caused me such deterioration and I am on the verge of an acute hosp admission now I've got so sick.
A week is a hell of a long time when ur being left with vital needs unmet, and my Mum is also being run into the ground by it.
So we're having to put it as a priority above Christmas, but at the same time we've been having such a bad time that we just want to enjoy Christmas, so it's a catch 22!
I think what u say wd be good advice for someone who's less severe and new to the system tho
And normally there's no way I'd make myself in a position where I'm I'll over Christmas by having a meeting just before. But since it's a crisis I have to really.
The social worker actually turned up at the house today cos he didn't get my email cancelling his visit, and he told my Mum at the door that he thinks the health funding cuts that have been made to my case are terrible and told her to pass the msg on to me, so that's encouraging!
As normally authorities and professionals just stick together to back each other up however wrong it is but the fact he didn't is encouraging I think.
Hope ur ok.
What do u do over Christmas, are u staying home, do u have family over or a quieter one?
Between a rock and a hard place but sometimes a CCG are swayed by hospital admissions the bean counters know it is far cheaper keeping you at home. The draw back is not well enough for coping with hospitals that are run for staff routines - making things worse than before you went in - damned if you do damned if you dont the decision could be made for them by circumstances (always keep a bag packed for unscheduled stopovers)
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Mostly due to a dry mouth with some medications I feel it is important to keep hydrated too. It does make you feel better. Had a day of it today had an hour gap between my nurses appointment and my doctors appointment and had to walk around the rain until I eventually sat on a damp bench ha Did not help having to walk home too. So sleepy and sore already.
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