Article: Treatment the UK way - the ME Association's ME/CFS Treatment Survey

You can view the page at http://www.forums.aboutmecfs.org/content.php?255-Treatment-the-UK-way-the-ME-Associations-ME-CFS-Treatment-Survey

 

I don't know what to make of the lightening process scoring so highly.
Are patient testimonials and subjective measurements reliable enough ?
Is this study protocol far more flawed and less rigorous than other treatment studies that we all love to bash and disregard ?
Is there a significant psychological component after all ?
Are a sizable proportion of the subjects misdiagnosed and suffering nothing more than depression/sleep deprivation/etc ?
Is there a strong correlation between money spent on treatment and benefits reported ?

Good questions, wdb.

I think with LP one needs objective measures. People get LPed (like being hypnotised) for 3 days and one of the things to say is that one isn't "doing M.E. anymore". So if somebody asks you, saying how well you are is part of the treatment. If you go for a walk, you are not supposed to tell people how many rest periods one had.

The numbers doing LP were small (101) with 26 people saying they were "greatly improved" - one could see how the process could be corrupted e.g. some therapists filling it in.

Also, what often seems to happen is people are on a high after doing the treatment - but crash later on. So if you have people who recently did LP, that would imbalance the figures. One wants to see long-term improvement with a treatment ideally - not just temporary highs.

 

[With LP,] saying how well you are is part of the treatment.

This is what worries me about people who've done LP filling in a questionnaire about their improvement; and given the commercial forces behind LP, I wouldn't put it past unscrupulous practitioners to pose as patients in a survey. The financial aspect of LP really troubles me.

 

I think Dolphin brings up some good points. As someone who did better on the Amygdala Retraining and who continues to improve doing mind/body work I wasn't surprised about the LP figure but there are so many variables not accounted for.

How ill were these people? How long had they been better? Is this the more highly functioning group that just needs a nudge to get better? Or is this simply a valid subset of ME/CFS; remember it was just 25% of the respondents - most people did not greatly improve. Could the sample have been skewed by LP practitioners? I hope not - on the other hand some of them may have been CFS success stories.

I don't think that mind/body success necessarily means 'psychology'. Parents are using behavioral techniques in autism early in life in an attempt to rewire their children's brain. Neuroplasticity is just about rewiring; say an area of the brain is damaged (by say a virus)? You can using by using behavioral or focused thinking techniques retrain other areas of the brain to make up for it. That's what happens in stroke victims - the stroke area of their brain NEVER recovers but if they patiently work at it they can force others areas of their brain to make up. A subset of people iwth obsessive compulsive disorder get it after an infection....normal beforehand - OCD after......I just read a fascinating story of someone from a good family with a good life who woke up one day and was depressed.....There was no psychological element to his depression..SOMETHING in the brain happened...

That's how I feel with CFS; SOMETHING happened.

 

This illness is not mild. I'm sick of CFS being conflated with being chronically tired. It's not the same. If you are tired, you can still ride your bike without feeling like a truck ran you over for the next two weeks. People do not have their lives destroyed by a 'mild' illness. Since when has losing your job, your house, your chance to have children been classed as mild? This has got to be the most stigmatised disease over the last 30 years, and the stigmatisation is always perpetuated by the medical profession.

 

This illness is not mild. I'm sick of CFS being conflated with being chronically tired. It's not the same. If you are tired, you can still ride your bike without feeling like a truck ran you over for the next two weeks. People do not have their lives destroyed by a 'mild' illness. Since when has losing your job, your house, your chance to have children been classed as mild? This has got to be the most stigmatised disease over the last 30 years, and the stigmatisation is always perpetuated by the medical profession.

I have to disagree I'm afraid. After being bedridden for most of the first 3 years, I slowly improved and for a few years my illness was mild, in that some days I felt mildly ill - weak, achey, shivery etc - but soon recovered and I didn't even have to take time off work. Then I had an 8 year 'remission' where I was 95% most of the time. All this time I knew something was still wrong but I was living a normal life. So at various stages my illness was 'mild'.

Since 2002 I've got progressively worse and have been mostly bedbound for the last year. This is a very serious illness, but as with some other neurological illnesses some people experience periods where their symptoms don't affect them greatly.

Many people in my local ME support group describe themselves as currently being 'mildly' affected.

Jenny

 

I agree something happens (in the brain not in the mind - infection crossing the blood brain barrier and damaging) Personally it was a slow and painful process from bedridden ill and loss of purely perceptual processes (near life passing out all too often) to painfully regaining recognition and memory. Nothing "external" (Psychos etc) could have aided. At one's own pace as able. Should add loss of perceptual processes did not exclude pain and full functioning after 11 years is restricted (I'm told reactive osteoarthritis) and IBS protocols must be permanent. No one thing suits all. Those in groups around me suffer from different "legacies". The other thing about the UK is that they tend to stop looking very early on (after initial test) and yet we hear people like Prof De Meileir finding various viruses etc needing treatment. Now XMRV (and related viruses) found present simply confirms our own intuitions. Treat the cause.

 

I have to disagree I'm afraid. After being bedridden for most of the first 3 years, I slowly improved and for a few years my illness was mild, in that some days I felt mildly ill - weak, achey, shivery etc - but soon recovered and I didn't even have to take time off work. Then I had an 8 year 'remission' where I was 95% most of the time. All this time I knew something was still wrong but I was living a normal life. So at various stages my illness was 'mild'.

Since 2002 I've got progressively worse and have been mostly bedbound for the last year. This is a very serious illness, but as with some other neurological illnesses some people experience periods where their symptoms don't affect them greatly.

Many people in my local ME support group describe themselves as currently being 'mildly' affected.

Jenny

Jenny - what an interesting story. Could you identify anything that contributed to your relapse? Were you able to exercise when you were feeling almost well? I think the course this disorder (altho I hate to call it 'this' disorder) - is so fascinating.

 

Mild?

I would suggest that most people who rate thier condition as mild do not have ME but are just run down or have some toxins building up from the environment or have unhealthy lifestyles. I used to feel tired quite a lot before I became really ill (ME) and now I know the different which is like having a cold as opposed to the real flu. Incidently a lot of people with colds maintain that they have the flu so its easy to see where problems in surveys can creep in.

The current state of patient care is pathetic and this is for a particularly vulnerable group of patients who need support more that most due to a very restricted ability to fight for themselves.

Incidently the odd vicodin does help a lot although I suspect that this is because it masks the symptoms .

Simon.

I'm amazed so many said they were now at mild levels of illness. I didn't know this disease had a mild level. I wonder how they measured "Mild-Moderate-Severe" levels of illness? I also wonder what inclusion diagnostic criteria was used. The report sounds like some of these people may just have chronic fatigue, not ME/CFS. I just don't believe that many people with real ME/CFS could possibly improve to mild levels of illness with LP, GET, etc.

You got me thinking about this subjective interpretation of disease severity. For myself, after a trip to the abyss (severe bed bound) and back now to a level I consider Moderate....but would have considered extremely severe 20 years ago. Kinda like being grateful for now being run over by cars instead of trucks.[/QUOTE]

 

I have to disagree I'm afraid. After being bedridden for most of the first 3 years, I slowly improved and for a few years my illness was mild, in that some days I felt mildly ill - weak, achey, shivery etc - but soon recovered and I didn't even have to take time off work. Then I had an 8 year 'remission' where I was 95% most of the time. All this time I knew something was still wrong but I was living a normal life. So at various stages my illness was 'mild'.

Since 2002 I've got progressively worse and have been mostly bedbound for the last year. This is a very serious illness, but as with some other neurological illnesses some people experience periods where their symptoms don't affect them greatly.

Many people in my local ME support group describe themselves as currently being 'mildly' affected.

Jenny

My progression has been remarkaby similar to yours. with a very severe onset, followed by gradually improving over a few years, then pretty much back to normal forabout 10 years but still always what others described as "sensitive" or "delicate" now i am back to moderate to severe.

I dont know about having your health mildly affected, but many people have mild M.E whereby they can still work full time etc. for me i have never been able to work full time, even when in my remmission phase - but then i did have 4 kids at home.

 

Jenny - what an interesting story. Could you identify anything that contributed to your relapse? Were you able to exercise when you were feeling almost well? I think the course this disorder (altho I hate to call it 'this' disorder) - is so fascinating.

Hi Cort - I relapsed in 2002 after a minor skiing accident which led to all over pain and an additional diagosis of FM. Since 2002 I started to have 4 month relapses with periods of wellness in between, then just over year ago relapsed very badly after 8 months of being 90%. So the accident was a trigger in 2002 but I really haven't a clue why I got so much worse in Oct 2009. Not 'stress', no infection, nothing out of the ordinary happened.

All those years when I was 95% - I was a single parent bringing up two young children, had a full-time academic job, played badminton regularly and went skiing at least once a year. When I had periods of feeling a bit ill again, I couldn't link them to anything at all.

Jenny

So frustrating!

 

Hi Cort - I relapsed in 2002 after a minor skiing accident which led to all over pain and an additional diagosis of FM. Since 2002 I started to have 4 month relapses with periods of wellness in between, then just over year ago relapsed very badly after 8 months of being 90%. So the accident was a trigger in 2002 but I really haven't a clue why I got so much worse in Oct 2009. Not 'stress', no infection, nothing out of the ordinary happened.

All those years when I was 95% - I was a single parent bringing up two young children, had a full-time academic job, played badminton regularly and went skiing at least once a year. When I had periods of feeling a bit ill again, I couldn't link them to anything at all.

Jenny

So frustrating!

yes, very frustrating. It really is a puzzle. I think FM and CFS are tied together and that accident triggered a more active pain network in FM and that somehow dragged everything in. It really is something!

 

My progression has been remarkaby similar to yours. with a very severe onset, followed by gradually improving over a few years, then pretty much back to normal forabout 10 years but still always what others described as "sensitive" or "delicate" now i am back to moderate to severe.

I dont know about having your health mildly affected, but many people have mild M.E whereby they can still work full time etc. for me i have never been able to work full time, even when in my remmission phase - but then i did have 4 kids at home.

Did anything trigger your relapse that you can recall? Did anything in particular get you out of ME/CFS or was it just gradual improvement over time?

 

Hi all,
These surveys of patient response occur all the time in ME magazines in the UK. They are all pretty inconclusive. It is time we moved on.
Dont talk to me about the lightening process. This is used in those NHS specialist clinics which are run by psychiatrists.
The psychs think we are not really ill, so they recommend a treatment which is not really a treatment
I bet they have a good laugh about it in their coffee breaks!

Most people found about LP from their alternative health specialist (41%) actually or from a self help book (20%); only 6% from psychiatrists.

 

I well know relapses too and it all points to an almost cavalier attitude here to a serious and long term disease over decades. We locally have only psychiatrics still. Sad to see overseas Members with positive tests coming in but naming the beast(s) must be a relief. Would that we could too and start to treat.

 

I've had that same acute>longish period of ok-ish>got worse recently progression. I also initially had a low thyroid condition which complicated the diagnosis. I was never bedridden and initially more FM than CFS/ME, which set-in later. No particular known trigger for my current relapse, but I used to be say 70% of my former normal capacity for say 4 weeks out of 6 dipping to 50% for 2 of the 6 weeks with the odd crash. More recently it's been flipping daily and weekly. I had been suspecting my thyroid, but the annual tests have come back as ok, although that's not conclusive that it's *not* a thyroid problem, just that the tests don't show anything.

My main worry is by constantly feeling slightly crap, and very crap at times, I may miss some unrelated malady that I otherwise would flag up as needing investigation.

 

I have to disagree I'm afraid. After being bedridden for most of the first 3 years, I slowly improved and for a few years my illness was mild, in that some days I felt mildly ill - weak, achey, shivery etc - but soon recovered and I didn't even have to take time off work. Then I had an 8 year 'remission' where I was 95% most of the time. All this time I knew something was still wrong but I was living a normal life. So at various stages my illness was 'mild'.

Since 2002 I've got progressively worse and have been mostly bedbound for the last year. This is a very serious illness, but as with some other neurological illnesses some people experience periods where their symptoms don't affect them greatly.

Many people in my local ME support group describe themselves as currently being 'mildly' affected.

Jenny

Like you, I would say that one can have mild forms of it, based on personal experience. I was a full-time student still performing at a high level for over four years with this illness (undiagnosed at the time). Unfortunately, to maintain the standard, I had to cut social activities down to a low level - I would have liked to have studied at a less intense level but the education system here doesn't really allow it and of course I wasn't diagnosed (just explaining that I wasn't driven - I would have liked a bit more balance in my life). In the year before I relapsed, I got myself up to cycling 6 miles or swimming 1000m (needed to take a short break to catch my breath every 50m) every second day, on top of my other activities. I have had severe M.E. for 16 years now. When I was "mild", I had few symptoms, and had them at a noticeable level for less of the time and generally they weren't as severe. Looking back, I had the very characteristic signs of M.E. e.g. the odd time I tried played little bits of sport with others and my body didn't like it, making me feel ill and malaised after.

So anyway, I wouldn't describe that 4+-year period as me having either severe or moderate M.E. so mild would seem the way to describe it.

 

Does brain rewiring really take place after 12 to 15 hours seminar teaching over three days? Thats what LP claims. LP clients are banned from saying or thinking they "have" ME. The must say that they "do" ME and can therefore stop "doing" it.
LP manipulates language to deny the bodys signals of pain and fatigue, and overides pacing, calling realistic awareness of the body's signals "negativity".

No other professional hypnotherapists, NLP practitioners or life coaches insist on total belief in the practices as a condition of being accepted as a client, just LP trainers.

LP marketing labels all valid critique of LP as "negative" and mere "opinions", claiming that only those who have done LP (and the trainers) can possibly know what LP is. The inventor of LP did not say that it was NLP at first, not until after people with ME who were familiar with NLP and did LP recognised the NLP content and started describing the NLP Process on patient forums.

And for a long time LP marketing defined ME as "an issue" and the recovery figures on the marketing site were based on numbers of people who had said (before they went home) that they had "resolved" their "issue" at the end of the three days. Thus LP controls the language used by clients as well as their thoughts, and controls the discourse.

At the Royal Society of Medicine CFS Conference of 2008, Jane Colby, Director of the Tymes Trust childrens ME charity stated that there were some very sad instances of children who had done LP saying that they were recovered when they were not and as a result one family lost vital social services and educational support for the sick youngster.

That's what LP teaches, to only speak and think in 'positives' and to redefine disease as a "resolvable issue". So, continously affirming recovery to oneself and others, whether or not actual recovery has taken place, is a fundamental part of LP. Thats why online surveys of LP recovery rates are unlikely to be reliable.

 

Did anything trigger your relapse that you can recall? Did anything in particular get you out of ME/CFS or was it just gradual improvement over time?

Hi Cort - yes my relapse was trggered by getting measles a few years ago. My kids all had it as they have not been vaccinated. I had been vaccinated and so had a nasty type with no spots, after looking after them one after the other for about 6 weeks. Then i got pneumonia and pleurisy, my lungs just gave in and became infected for about 9 months and i had 14 courses of antibiotics and a massive dose of steroids which i was left on for too long. All a bit of a mess really.
The first time i dont know what made me better. I was undiagnosed so didnt know what i was dealing with. I thought i was just mentally ill, but with some really weird body disregualtion problems. I worked really hard at the things i thought would help in those circumstances. I gave up alcohol and did meditation and relaxation. I slept about 16 hours out of 24, whenever i could. I did keep active when i could and even managed at that point to exercise. My GP sent me to an exercise referral scheme and i would go for a while and then have to come home and collapse for hours.i also took antidepressants which helped with the anxiety although i wasnt really depressed. Eventually i just got better, i dont know how. Since the relapse my illness has been much worse than the first time and it is taking longer to recover - and more effort. I dont exercise at all now or take anti-d's since a really bad reaction to them.

 

These are just such amazing stories! I guess you've tried the things you did before? the meditation and relaxation exercises, anti-depressants, etc.

I really do think that when some people get better it probably is hard to pinpoint what did it - they slowly improve and their body somehow shifts into a healthy state; its like it gets over the hump and once it does that it propels itself into better health.

Dr. Vernon talks about system shifts - like the system shifts to different and less efficient mode of operating - which is the best it can do at the time and then gets stuck there and moving it off that point is difficult. I think I am there because I can take treatments that temporarily help me but once that energy goes up - my system seems to crash; it does not want to move off whatever set point its at.

 

I have been feeling better lately - basically by making sure that I in as pleasureable a state as possible. That lifts the tension for me and allows my body to relax but it is so slow....I wonder, though, if slow is necessary for me. I've reacted so well to some treatments that I think I could have gotten over this disorders decades ago if I could have just kept taking them - but every time if I did that would crash - get much worse actually. It was like my body could handle the push. Now I'm feeling better (without being able to increase my physical activity much) and I wonder if this very slow progress is what's necessary for my body to kind of knit together properly.