how have you got on with the structured exercise cfs clinic get you to do?

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?

Has your doctor written any papers on his treatments?

I'm grateful to him for sparing me from it now. 

they say they are concerned about physical conditioning implying that previously fit folk are not.

If you could place it on-line with info of when/where it was from then it could be available to anyone. A scanner would be best, but photos work fine too. It's always nice to have as much evidence as possible of these sorts of things.

postimage . org or similar sites let you put images up. You could then pm me, or you'd probably be able to post a link publicly (I think patient . info would allow that? not sure).

I'm surprised that they're still trying to emphasise deconditioning as having an important causal/maintaining role, when this is just not supported by the evidence.

Let me know if that's not okay.

I think CBT and GET would be useful for many illnesses - but for CFS I can't see it as a primary level help!

In my early months of CFS, I found out about boom and bust the hard way.  Previously I'd always been able to shake off minor illness by having a big workout on a bike.  With CFS, I've never been able to get close to even 5% of my former fitness and endurance - and minor exertion like a short slow walk could leave me housebound for a couple of weeks.

Subsequently, I've found body weight stuff, like a few press ups, sitting against a wall, a few crunches - better for physical condition than walking slow for a few hundred metres.  I've kept track of that.  I've found I improve for a couple of months, then stay the same, then decline - and need a break for a month.  That doesn't fit the expectations of the flowchart or clinicians.

Ive taken up knitting, while reclining!  It's a way of contributing to life - but during decline times, I can't do that and resort to Netflix

You must have been post-PACe if it was a couple of years ago. Can you remember what claims they made about efficacy/recovery rates? There's been some trouble with the evidence being msirepresented in this area, and it's interestng to hear more about what people are being told in different clinics.

Best of luck trying to find what works best for you.

Not sure where I remember it from, but the BMJ says something along the lines of "a quarter of patients had moderate recovery, but moderate is not defined"

I have been unable to find any statistics about GET enabling people to improve enough to return to work.  I asked the specialist at the CFS clinic, but they were not prepared to tell me!

So if 25% of the 160 for GET had moderate improvement, it is untestable that it works for Euthymic people (those without mood and anxiety disorders)

"Both work as a bolt on to specialist care, although their overall effects looked modest. Less than a third of patients were cured by either treatment (30% (44/148) after CBT and 28% (43/154) after graded exercise therapy). "

The PACE cost-effectiveness paper in PLoS includes employment data, and it showed that neither CBT nor GET led to improvements in employment data.

Sorry to hear your pensions people were being rubbish. Again, if you've got any stuff from them making claims about GET efficacy, or saying you have a responsibility to try it, that sort of stuff is always interesting.

I've tried to find that paragraph in bmj but haven't - can you give me the particulars such as page month date of the magazine please?

Sorry to be thick, what is PLoS?

for me this IS remarkable. i've had these 2 interventions with no response from CBT. GET put me back in bed for a few months. and i'm v. curious to know what IS the ''specialist'' treatment they had, before the bolt on 'wonders'???

"Cognitive behavioural therapy (CBT) and graded exercise are the best treatments for chronic fatigue syndrome, according to a rigorous trial of four different options. Both treatments looked safe when added to specialist medical care and worked better than adaptive pacing therapy or specialist care alone. "

@ caitlin39841

"the BMJ is saying that 44 ppl out of 148 were CURED by CBT, i.e they are now back to full time work, parenting, having a social life, problem free holidays & no down time. and the 43 out of 154 have had similar outcomes from GET"

No, the BMJ is saying that people were cured by CBT and GET despite the fact that there was no improvement in employment or fitness assocaited with CBT and GET, based upon a misrepresentation of self-report measures in a non-blinded trial.

The PACE trial researchers claimed that patients got 'back to normal' with CBT and GET by re-defining what 'normal' meant, meaning that patients could reported worse questionnaire scores for physical function and fatigue than before treatment, and no other improvements, yet still have the BMJ claiming that they have been cured. Then the BMJ tries to have readers believe that patients upset by this are unreasonable, anti-psychiatry and stigmatising mental health problems.

I know that this sounds rediculous, but it's sadly true. A lot of CFS research is loathesome quackery.

That's appalling! But it does explain why, when I asked for my CFS specialist's "evidence base for return to work" he wasn't prepared to go there!

Sorry you are suffering and having all the rubbish from clinics too

I think it's quite nasty how deliberately evasive and manipulative a lot of CFS 'specialists' are with patients. Some seem to be genuinely stupid, and fail to reaslie what they're saying is inaccurate - that's probably preferable imo.

A doctor friend of mine thought rather less of it than you do!

The rest of the manual does talk of negotiation, interests that the client enjoys, from walking to weights, from cycling to gardening to DIY. But the assumption is improvement.

It advises- if you are tired, push through with the GET. However, as you can see, if you do - and get worse, it's called 'doing too much'.

Elsewhere on this thread, I've put up detailed studies with chemical analysis of how there are biological markers and how GET can be damaging for some.

In the manual the charts are from, it instructs the clinician not to discuss with the patient any findings or research which is negative about GET. I asked my CFS clinic for their return to work evidence base. They were not prepared to discuss it.

I try and maintain strength by doing pressups and crunches and light dumbells for 20seconds each, five days a week. It's uprightness and endurance I can't do.

I believe the BMJ had this piece written to justify keeping on with what the system is geared up to do.  Think how many CBT practitioners and physios would be out of work if they agreed with the IOM conclusions.

It's a waste of effort complaining about the suggested diagnostic criteria.  They clearly state that it is  'working title'.  The important thing is that the following month, the CDC withdrew their treatment guidelines from circulation. No more CBT/GET in the US is their aim.

Thank god they did it.  I suggest people plough through the whole report a bit at a time - or even read the conclusions fully.  They are effectively saying that ME/CFS is a REAL ILLNESS and not 'all in our heads' and that much more research is needed.

It's the best thing that's happened for our community so far!

Thanks

Are you in the US?  Oops - obviously you don't have to anser that!  I'm only asking because I think there is a much more informed patient involvement community there.

I remember ringing them in the old days and spending the first five minutes discussing accents with the lady on the other side.  She had a wonderful southern drawl and I'm Scottish.

You can put links but it takes days sometimes to be moderated.  But if you put a detailed search term so we can copy it into a search engine it's OK

Looking back - you are absolutely correct!  Sorry to bug you!  Do you get the Health Rising blog?