I recently went to the cfs/me clinic. But i wasnt toi impressed the first lady basically told me its all in my head due to my mental health.. So i was reffered to phychologist and a physio psychologist for the GET therapy?
She started me off with a 15 minute walk everyday gradually increased.. They say if u do this u build stamina and then you wont be basically ill anymore you have to get up at the same reasonable time everyday.. Go to bed at a reasonable time..
But doing this walk everyday sometimes wasnt even possible for me as i can spend days in bed not getting up.. But then im told well u will never get better unless u do this everyday and build up your stamina..
I feel like they just look at me see that im over weight and think lazy cow.. No wonder she gets tired.. But i only been over weight since getting this illness as i barely move most days!
Yeah. Spent ages doing GET because they lied to me about it's efficacy and the role of deconditioning in perpetuating my symptoms. Total waste of time. No evidence that GET is any more than a laborious placebo, leading to nothing more than minor imporovements in self-report measures, without being able to improve fitness.
Worth trying to get evidence of all the claims they make to you, as it seems a lot of clinics are still quite actively misleading patients. If you start asking tough questions then they'll probably clam up a bit, but getting a recording of them explaining themselves to a confused patient is more likely to be revealing. There's a video called "how's that recovery" which illustrates some of the spin around GET/CBT for CFS.
Having said that I'm not anti-exercise, which does have benefits as well as costs for everyone... GET is totally misold for CFS, but we can all, as individuals, make decisions about what sort of/ammount of exercise works best for us.
hi january. i'm horrified to hear that u were subjected to this abusive drivel from this so called professional. this person is NOT a Dcotor, so DO NOT have remit to give diagnosis i.e. ''it's all in ur head'' - most unprofessional.
in respect of GET & PACE progarammes: the outcomes are v. mixed. it seems to work ok for some ppl by helping them, to more efficiently manage the FINITE amount of energy their body can make in a day. for others (those who were pushed to do too much too soon, or mis-judged their own abilities) had bad outcomes - they got worse.
i don't know how severe ur ME/CFS is, or how much exercise u can do without compromise i.e. having repercussions for over doing it. however, starting off with a 15 minute walk sounds a lot to me. they should find out what ur 'baseline' mobility abilities are i.e. how much 'exercise' u can do WITHOUT getting fatigued or generating delayed fatigue first and work from that premise.
my advice would be to do the amount of 'exercise' that your body feels 'comfortable' with. that would be, the amount that does not generate 'delayed fatigue'. i had a similar situation & ended up in relpase for about 6 months. i now tend to 'listen' to my body and respond accordingly. often that involves ME telling the professionals what i can and can't do, eventhough it's energy depleting doing it.
That's so shocking january; if I was you I'd like to exercise by punching her in the face repeatedly!
I had a much kinder person, an occupational therapist, who taught me to do gentle yoga on the bed but it didn't work because I didn't have the drive required for it. I ended up more stressed and in relapse, and beating myself up because I couldn't keep it up.
GeorgiaS. pls. don't beat yourself up. it's just our body's failing us rather than us failing our bodies. but i know the debilitating feeling when we feel we have failed yet another intervention.
best Caitlin
p.s. loved ur proposed exercise for january - had me in stitches?
It's people who try and foist this sort of drivel on us that have set the research and treatment of ME/CFS back to the dark ages. Ignore what they have said totally and refer them to The WHO definition of ME/CFS if they insist on trying to say that you're suffering from a psychological illness and complain to the Ombudsman if they persist... Just Google ' Parliamentary and Health Service Ombudsman.'
Try and find a local ME/CFS support group near to you, they will give you the sort of real advice that you are looking for.... and if you can't ask here if anyone knows of one in your area.. With a bit of real help we can all improve our lot..
Lol Glad you like my exercise therapy for january, we could make it a group project perhaps? One thing that I can still do is laugh and I don't need graded exercise for that.
Thank you for reminding me to try to stop judging myself by other's standards or what I can't do.
These CFS/ME clinics are a insult to those of us with this VERY REAL PHYSICAL ILLNESS CFS. I was years prior to diagnosis a semi professional triathlete, i want nothing more than to go back to the gym, go running and swimming but i physically cannot, the notion this is all in my head is insane, and if exercising gradually was the cure i would be cured by now, it's my experience that exercise although important can be damaging to us folks with CFS, i cannot get my heart rate over 100bpm or i will feel really ill. It's a torture illness because i know most people you deal with believe it is all in your head, which makes it that bit more worse.
I read something very helpful the other day. Unfortunately I didn't save the website. Basically it's that graded exercise and CBT are no longer considered to be appropriate treatments for people with ME.
My advice once again ,! ME/CFS is a diagnosis of exclusion , are you 100% sure all all other tests have been done?? NO! Because your GP will only send the tests HE/SHE thinks are relevant to your symptoms. All these tests come back from the lab normal , you may be sent to an endo who will do same tests for thyroid problem blood tests once again come back normal. Unless there is signs of a goiter for instance you will be sent away with same diagnosis , thyroid normal tests prove it you should feel fine . So it goes on you feel so ill back and forth to GP prob test again result normal , nothing abnormal found. Many patients suffer with pain in joints and muscles you are most likely to be diagnosed with fibromyalgia no relief from it nothing really helps , pills and potions may ease pain slightly , massage may ease it . You try reflexology , acupuncture . Meditation any thing you think might help, do they help? NO. I know from bitter experience ,I had all the awful symptoms and pain for years trying to to make GP s doctors and endo s give me a trial on thyroid hormone replacement I had read up on all the different illnesses with similar symptoms and the one that stood out to me was thyroid disease . I was " diagnosed " with ME/CFS and expected just to live with it! I researched findings and treatment other doctors clinicians specialists wrote about in books lectures etc and I knew from all the info gathered I had a thyroid problem , no matter what the blood tests showed. I eventually found a doctor who went against the blood results and treated me for the symptoms a low dose of thyroxine to start and then upped over 3 months , amazing!!! Dr Gordon skinner treated many hundreds of patients diagnosed with ME/CFS with normal thyroid test results , dr durrant peatfield another doctor who went against blood tests and treated patients by symptoms dr John Lowe yet another doctor and researcher who treated patients with normal blood tests suffering from all the symptoms of thyroid illness and fibromyalgia , going against all normal blood tests And these doctors saved patients years of suffering by prescribing some form of thyroid hormone, Either T4 or T3 Or NDT . Dr skinner was brought in front of the GMC many times for mal practice but hundreds of his patients he had made well stood up for him and told how their lives had been changed because of his treatment , he was allowed to continue this practice. Sadly dr skinner and dr Lowe have since passed on will any doctor take their place and carry on fighting against TSH T4 bloods which doctors stick rigidly to. Dr peatfield uses the basal temperature method as part of his diagnosis dr Lowe stated , the first tests done for thyroid should be peroxidase and thyroglobulin as if patients have autoimmune thyroiditis the usual tests will be useless because it can be years before the thyroid gland is damaged enough by antibodies, to effect the TSH and hormone results . Dr Lowe also after years of research said " the missing ingredient for fibromyalgia is thyroid hormones. Read up on all these doctors and make your own mind up .
If phramaceutical companies invented a drug that they could get on research outcome to prove, which are often manipulated, the drug could be pumped out to ME, fibro patients and we'd all be hearing about it and jumping on board, even if it was proved to do nothing or even make us worse.
My point is that the reason we're so neglected and treated like hell is because they can't make money out of us.
Thing is if they had an effective treatment (not a cure) something that eliminates the fatigue 90% i think most of us would take it on an ongoing basis. So they are missing out on a huge market and thus profits. I mean how hard can it be to at least alleviate the fatigue ? To develop a drug that does this relatively safely. Maybe one day, i'm not holding my breath for a complete cure from the drug companies, they rarely develop those as you say solely because of profit.
I'm prescribed Thiamine and though it helps it doesn't help enough.
Research is suggesting that it's the mitrochondria that is the issue that should be focused on. I've been taking Rhodiola rosea which is helping my mitrochondria. 5-HTP helps with energy and calmness due to promoting serotonins. I take herbs that help.
I'm not better yet but like you I keep researching, trying things and I've kept going but one thing I can't and won't do is spend lots of money on a whim. Did Dr Lowe charge you money? And are you better?
They aren't willing to even research ME enough even for something to alleviate symptoms because research trials, large enough ones, then the meta ones costs a fortune.
They wait until something they're willing to gamble on comes up and there's nothing as yet.
