Anyone know anything about King's College or Great Ormond St CFS Units?

[Spinney Lainey]

Ok, so I finally got my first appointment at King's, London yesterday. I spoke to a psychiatrist, who was basically making sure I wasn't insane.

In the waiting room yesterday was a questionnaire explaining that they were thinking of giving an umbrella term to all the illnesses like CFS and IBS that had symptoms with no known specific cause. Some of the suggestions they gave were:

Unknown Medical Symptoms
Somatoform Disorder
Bodily Distress Disorder

I looked up somatoform disorder and this is what I found: http://en.wikipedia.org/wiki/Somatoform_disorder

Then I looked up about Prof S Wessely, head of the unit and found: http://www.chapmancentral.co.uk/wiki/wesselygate/ and http://www.meactionuk.org.uk/reasons-for-patient-disenchantment.htm

All in all, I was pretty horrified.

They've referred me for CBT and graded exercise but Purple on here says their attitude about it was totally wrong and that they told her to ignore the post-exertion fatigue.

So am wondering whether to try to be referred to Great Ormond St instead. Has anyone else been to either of these places?

Or has anyone else had an experience of transferring from one NHS service to another?

 

[ukxmrv]

I'm sorry that you had to find out the hard way how bad these services are. Most London patients refuse to be seen at Kings.

I'm not sure what the Gt Ormond St clinic is that you are referring to. My guess is that it is the one at the old Homeopathic Hospital (has another name now , which is located on the cnr of Gt Ormond St and Queen Square). There is a clinic for children at GOS Hospital.

My experience was that the Homeopathic Hospital could offer some things BUT I refused to be seen at the CFS clinic as it was all CBT and GET. I was a patient at the Hospital before there was a "CFS clinic" (it's really a fatigue clinic).

In London you get to chose the "best of a bad bunch" and weigh up the crumbs of help that may be available. I'd go for either Dr Murphy at the Royal Free or Dr Main at St Charles. My reasoning is that personally they have offered me the more small crumbs of help. It depends what you want to focus on.

 

[Spinney Lainey]

Hmmm. The only thing which seems potentially positive about King's is that I was given some info on some research they were undertaking, asking if I wanted to partake. They seem to be looking into physical causes e.g 'The role of the immune system in the development of fatigue', 'Nervous system activity in CFS' and 'cortisol levels in bipolar, depression and chronic fatigue syndrome'. Therefore, I'm a little confused, as this goes against Prof Wessely's 'somatoform disorder' ideas......

 

[Snow Leopard]

They seem to be looking into physical causes e.g 'The role of the immune system in the development of fatigue', 'Nervous system activity in CFS' and 'cortisol levels in bipolar, depression and chronic fatigue syndrome'.

The first is vague, but potentially promising, depending on who is doing it. The second could mean anything, and is probably psychologically focussed. The last one is likely a junk study as cortisol has been done to death and doesn't tell anyone much on its own, if they were measuring about 10-15 aspects of the neuroendocrine system (including receptor expression) at the same time, it could be interesting, but they won't so...

http://www.kcl.ac.uk/innovation/groups/projects/cfs/patients/physiology.aspx

They seem to be saying that the symptoms are perpetuated by deconditioning, something that has already been disproved in the scientific literature.

They fail to appreciate that our fatigue is not merely exercise or activity related - it is in every muscle - deconditioning cannot explain the fatigue we experience in our eyelid muscles for example (for those of us who are up a similar amount of hours as before).

At the end of the day, there is no evidence base that shows that GET (or CBT) allows patients to increase their activity levels back to normal and all evidence so far points to the contrary.

All I can say is seek treatment elsewhere.

 

[Esther12]

Wessely is a nasty quack, and he runs KCL. The approach to CFS he has promoted is the reason so many patients feel unable to trust their doctors.

Interesting to know that they're now lumping people into ever more meaningless groups. Bodily Distress Disorder is a particularly good one imo.

I wrote a post responding to some of his excuses here, and have been meaning to update it: http://forums.phoenixrising.me/index.php?entries/simon-wesselys-personal-story-annotated.1054/

 

[Valentijn]

@Spinney Lainey - You were right to be horrified. They're a bunch of quacks who believe (without any supporting evidence, and quite a lot of evidence to the contrary) that there is no biological mechanism to ME/CFS beyond deconditioning, and that anything without a known cause must therefore be psychosomatic.

GET makes a majority of patients worse, according to a large survey done by an ME/CFS charity. The brand of CBT they use is going to blame you for your own illness, and will try to cure you by convincing you that you aren't actually ill. This can seriously fuck some people up, and is likely to be a very unpleasant experience regardless.

I've read basically all of Simon Wesseley's published research. Even when testing low dose hydrocortisone, and it helping, the recommendation is always that it should not be used. When any biological abnormality is found, they come up with some bullshit hypothesis to explain why it doesn't matter. They are not involved in scientific discovery, but rather they attempt to block and oppose it.

 

[xrunner]

Around the time of my initial diagnosis I saw various people (St Bart, Royal Free, UCL) as back then I knew nothing of ME and what they were telling me didn't make much sense and was desperate for somebody who would tell me exactly how to recover. A few years later I also went to St Charles and saw Dr Main.
I agree entirely with what was said in a previous post about Dr Murphy and Dr Main.

 

[Spinney Lainey]

Oh my! What to do.......does anyone know if it's possible to ask the GP to refer from one clinic to a different one? The only other one I'd really want to go to is Great Ormond St - as I have a friend there who says Dr Roniger is pretty good. Not sure what the other treatments are like there though........

Or people on here have mentioned Dr Main....

Am surprised people seem to think Dr Murphy was ok, as I thought she was mates with the guy who created the 'Yuppie flu' term......and from what I've heard, is from the same school of thought as Wessely....

 

[Spinney Lainey]

I'm thinking maybe I should try the treatment for a bit and then if I find it's as bad as it seems like it might be - I can then at least say I've tried it but didn't work for me and then try and get referred somewhere else.......

 

[Spinney Lainey]

To be honest - I am now totally confused about whether nor not my illness is all created by my mind. I definitely believe the mind can make things worse from the stress of being ill, as I was greatly helped by changing my thoughts through the use of NLP techniques learnt at The Optimum Health Clinic. There are countless cases too of the placebo effect and how people can recover from any illness just by changing their belief systems. When I learnt to stop the negative thoughts that were sending messages to my body and learnt to be more calm, I definitely improved prior to my recent relapse (which was due to appendicitis and surgery). So maybe the mind could be creating all this but even if it is - there are definitely abnormalities in my body! Can anyone give me a link of evidence that shows that M.E is not due to de-conditioning? Would also be grateful for any links, so that I can read up on what physical abnormalities have been found. Cheers

 

[Spinney Lainey]

@Spinney Lainey - You were right to be horrified. They're a bunch of quacks who believe (without any supporting evidence, and quite a lot of evidence to the contrary) that there is no biological mechanism to ME/CFS beyond deconditioning, and that anything without a known cause must therefore be psychosomatic.

GET makes a majority of patients worse, according to a large survey done by an ME/CFS charity. The brand of CBT they use is going to blame you for your own illness, and will try to cure you by convincing you that you aren't actually ill. This can seriously fuck some people up, and is likely to be a very unpleasant experience regardless.

I've read basically all of Simon Wesseley's published research. Even when testing low dose hydrocortisone, and it helping, the recommendation is always that it should not be used. When any biological abnormality is found, they come up with some bullshit hypothesis to explain why it doesn't matter. They are not involved in scientific discovery, but rather they attempt to block and oppose it.

Would you be able to give me links for the evidence of biological factors in M.E and that it is not caused by de-conditioning? Also could you point me towards evidence that GET and CBT make M.E worse? I need to read up on this myself. Thanks

 

[taniaaust1]

Hi, I think you need to work out where you fit with all this so that you know what will be the best way to go. If you have "CFS" as defined by criteria that real ME patients find very poor (rather then proper ME), it may well be that GET and CBT could be of great help to you.

If you thou fit what is know as the Canadian Consensus defination or the International ME definition which includes post excertional fatigue, something like GET is very likely to cause more harm then be good for you. For these definitions the links for them are on the right hand side if you scroll down at http://sacfs.asn.au/ (note the canadian consensus one includes a chart showing based on studies (references are included) how physiologically different ME/CFS patients are compared to healthy people in regards to exercise and hence why exercise can be bad for us. Check that out if you want to see the differences). At the end of the canadian consensus doc overview if you click the link to the Document.. there is also a page which lists various abnormalities to look out for in ME.

Some of the ME abnormalities I have are low cortisol, abnormal EEGs, positive romberg test, autonomic dysfunction which can be seen on tests or monitoring. If the right tests are done in ME, abnormalities will be found.

Even CBT when done wrongly eg blaming the patient for the illness or trying to make the patient think its in thier head instead of paying heed to their symptoms.. can be harmful for many ME people who end up crashing and worsening their ME level, due to what they've been told.

best luck

 

[Esther12]

There are countless cases too of the placebo effect and how people can recover from any illness just by changing their belief systems.

Really, I prefer to have people make up their own minds about their illness, and how to respond to it (one of the problems I have with Wessely is his willingness to manipulate patients without informed consent), but also, I've got to point out that a lot of rubbish is talked about the placebo effect, and it's magic healing properties. People cannot recover from any illness just by changing their belief system.

There's a lot of spin and dishonesty around CBT and GET for CFS, and some recent posts of the BMJ have been examining how data is misrepresented to patients: http://www.bmj.com/content/347/bmj.f5963?tab=responses

re deconditioning being the cause of CFS: if this were the case, GET would be pretty consistently curative. It isn't. It's likely that people with all manner of different problems get dumped with a diagnosis of CFS, and then find themselves being manipulated into believing false claims about the efficacy of GET as a treatment by quacks who want to pretend they know what they're talking about. Actually, I'd be amazed if anyone at KCL was stupid enough to explicitly say that CFS was caused by deconditioning, even if they'll only list it and other easily reversible things as perpetuating factors for CFS.

PS: you were actually posting while I was typing. Good to know that you want to be better informed about these sorts of things so that you can decide for yourself how to proceed. I'd encourage you to read more about non-CFS quackery as well, so that you have a better understanding of how patients are often manipulated. eg I got linked to this last week: http://edzardernst.com/2013/09/can-one-design-a-trial-which-inevitably-produces-a-positive-result/

I'm afraid that it often gets quite complicated. Graham did some good introductory videos to the spin around PACE here: http://forums.phoenixrising.me/index.php?threads/accessible-analysis-of-pace.19666/

 

[Spinney Lainey]

Hi, I think you need to work out where you fit with all this so that you know what will be the best way to go. If you have "CFS" as defined by criteria that real ME patients find very poor (rather then proper ME), it may well be that GET and CBT could be of great help to you.

If you thou fit what is know as the Canadian Consensus defination or the International ME definition which includes post excertional fatigue, something like GET is very likely to cause more harm then be good for you. For these definitions the links for them are on the right hand side if you scroll down at http://sacfs.asn.au/ (note the canadian consensus one includes a chart showing based on studies (references are included) how physiologically different ME/CFS patients are compared to healthy people in regards to exercise and hence why exercise can be bad for us. Check that out if you want to see the differences). At the end of the canadian consensus doc overview if you click the link to the Document.. there is also a page which lists various abnormalities to look out for in ME.

Some of the ME abnormalities I have are low cortisol, abnormal EEGs, positive romberg test, autonomic dysfunction which can be seen on tests or monitoring. If the right tests are done in ME, abnormalities will be found.

Even CBT when done wrongly eg blaming the patient for the illness or trying to make the patient think its in thier head instead of paying heed to their symptoms.. can be harmful for many ME people who end up crashing and worsening their ME level, due to what they've been told.

best luck

Not sure exactly what you mean because post-exertion fatigue is definitely listed as a symptom for CFS. I certainly have it with a vengeance, too. Is it not possible to slowly increase the activity level with caution? Otherwise I'll just never be able to walk...

 

[Valentijn]

Would you be able to give me links for the evidence of biological factors in M.E and that it is not caused by de-conditioning? Also could you point me towards evidence that GET and CBT make M.E worse? I need to read up on this myself. Thanks

I wrote an article regarding most of the "main-stream" myths and the sources which dispute them at http://phoenixrising.me/archives/18487 .

Something I forgot to mention in my earlier post is that there is research which pretty well proves that CBT and GET also do not result in any improvements in physical ability, when measured objectively via actometer. At best, people just answer questionnaires a bit better regarding symptoms after being brain-washed for a while to deny those symptoms.

 

[Valentijn]

To be honest - I am now totally confused about whether nor not my illness is all created by my mind. I definitely believe the mind can make things worse from the stress of being ill, as I was greatly helped by changing my thoughts through the use of NLP techniques learnt at The Optimum Health Clinic. There are countless cases too of the placebo effect and how people can recover from any illness just by changing their belief systems. When I learnt to stop the negative thoughts that were sending messages to my body and learnt to be more calm, I definitely improved prior to my recent relapse (which was due to appendicitis and surgery). So maybe the mind could be creating all this but even if it is - there are definitely abnormalities in my body! Can anyone give me a link of evidence that shows that M.E is not due to de-conditioning? Would also be grateful for any links, so that I can read up on what physical abnormalities have been found. Cheers

The placebo effect can result in people believing and reporting that they are cured or improved. But studies involving the placebo effect which look at objective measurements (eg, blood results, etc) reveal that it is not resulting in actual improvements.

The basic symptoms in the disease also have pretty much nothing to do with actual descriptions of real deconditioning. They like to compare PEM to the effects of a healthy person starting a new exercise program, but I'm pretty sure that healthy people don't get pain in muscles they didn't even use, or plummeting oxygen saturation levels lasting for days, accompanied by rising heart rate also lasting for days - but this happens to myself and others. How does deconditioning or psychological issues explain my right tonsil being noticabley swollen for over a year now? How is it that supposedly deconditioned people can go from being unable to walk up the stairs one day to being able to walk up them normally the next day during a remission, with only mild and normal muscle soreness?

There are also several studies showing that ME/CFS patients have a unique reaction to exertion, when tested two days in a row. On the first day their performance will be similar to that of sedentary controls. On the 2nd day, those controls will do a bit better and ME/CFS patients will do significantly worse. This is pretty good documentation that 1) PEM is real and 2) that it's not the result of sitting on our butts all day.

It also might help you to understand how the psychological theories of ME/CFS evolve over time, as their previous beliefs are proven to be incorrect. At first, they believed ME/CFS was an odd type of depression in people who refused to be labeled with depression and insist on having a "real" disease. Treatment was entirely CBT at that time. Then multiple studies of their own showed that we do not have typical depression, so they decided we must have atypical depression, and CBT is still the prescribed treatment.

Then they decided there must be an abnormal fear of exertion specifically, due to the widespread experience of PEM by patients, but the treatment was still CBT with some GET added in - with the explicit caveat that GET was completely incapable of making an actual difference in physical condition, and was just there to help the patients get over our presumed fear of exertion. Then biological signs started becoming well-documented by real scientists and researchers, so those symptoms were explained away as being due to deconditioning, despite the complete lack of a scientific framework to explain how deconditioning could actually cause those symptoms. CBT, as always, was still the answer.

When some Dutch studies a few years ago showed that CBT/GET do not result in any objective physical improvement via actometers, despite improvement in self-reported "fatigue", the rather bizarre conclusion was an improvement in physical condition isn't necessary to cure us. Because as far as they are concerned, self-reported fatigue is all that matters, not actual disability. And the cure, of course, is still CBT.

When it comes to the psychological view of ME/CFS, there is one theme that has been constant over the years - CBT is the cure. No matter what the research shows, if they cannot ignore it they will find a way to warp the data to conclude that CBT is still the cure.

They are not engaged in science. They are engaged in advocacy. They have their belief of which they want to persuade everyone, and then they try to build up an argument to support it.

 

[Valentijn]

Not sure exactly what you mean because post-exertion fatigue is definitely listed as a symptom for CFS. I certainly have it with a vengeance, too. Is it not possible to slowly increase the activity level with caution? Otherwise I'll just never be able to walk...

It'll be possible to increase activity levels after you recover somewhat. Increasing exertion doesn't lead to recovery, however.

Pacing can be a big help in preventing the exacerbation of symptoms. Basically not pushing yourself, seeing where you're struggling, and resting a lot. I use a finger pulse oximeter to help me with pacing, though some people prefer a heart rate monitor instead. If my oxygen starts dropping and my heart rate starts rising to compensate, I need to rest. If I try to keep going when my heart rate is too high (90+ when resting, or 110+ when doing anything), then a crash follows, and greater disability.

There are also drugs, vitamins, and supplements which can help in dealing with symptoms, and improve quality of life. Orthostatic intolerance is especially disabling and treatable. Mine is caused by low norepinephrine levels (shown on several tests) likely due to the effects of a gene which has been shown to be over-expressed in ME/CFS patients caused by over-exertion. A norepinephrine reuptake inhibitor helped me a lot at first, and now I take Yohimbe, a cheap supplement which happens to be the most potent antagonist of that over-expressed gene. I can sit up all day now, I can think pretty clearly for most of the day, and I can handle a couple hours of sitting in a car from time to time without crashing. It's even about 10% easier for me to walk up the stairs now.

Just because CBT and GET can't improve things doesn't mean that things can't improve. Doctors can help, if they want to, as can over-the-counter vitamins and supplements. There are specialists who treat ME/CFS as a biological disease and test for and treat infections, deficiencies, etc. One is Dr Myhill in the UK, and another is Dr de Meirleir in Belgium.

 

[WillowJ]

To be honest - I am now totally confused about whether nor not my illness is all created by my mind. I definitely believe the mind can make things worse from the stress of being ill, as I was greatly helped by changing my thoughts through the use of NLP techniques learnt at The Optimum Health Clinic. There are countless cases too of the placebo effect and how people can recover from any illness just by changing their belief systems. When I learnt to stop the negative thoughts that were sending messages to my body and learnt to be more calm, I definitely improved prior to my recent relapse (which was due to appendicitis and surgery). So maybe the mind could be creating all this but even if it is - there are definitely abnormalities in my body! Can anyone give me a link of evidence that shows that M.E is not due to de-conditioning? Would also be grateful for any links, so that I can read up on what physical abnormalities have been found. Cheers

Hi Spinney, having stress can make one feel worse. Improving stress will undoubtedly make a person feel improved in various ways. I'm in favor of relieving stress when it is present. However, there is no sound evidence that stress can cause any illness (except PTSD, which is no less a valid disease--it has real physical changes in the brain) or that addressing stress can cure any illness.

So while people who were previously stressed will feel better when this has been addressed (and perhaps have somewhat reduced pain) and have better quality of life and perhaps be able to relate to people in their lives in a more healthy way, the stress doesn't address the central mechanisms of CFS (not even Oxford-CFS) * or ME or any other disease (except, again, PTSD, but it isn't clear that this can be treated by stress-relieving techniques or counseling alone).

*[not to say that Oxford-CFS or even Fukuda-CFS is "a disease or syndrome" because these are just a very bad and a bad classification (into which a variety of mismatched patients are put), in my view]

There are undoubtedly stories of people becoming better when improving stress (and with various other unrelated things). Many diseases have some rate of remissions or of spontaneous recovery, including post-viral fatigue syndrome (e.g. a longish case of mono), major depressive disorder, multiple sclerosis, etc., and all of these examples (plus more) could be taken for ME. ME itself often has a relapsing-remitting course.

People will tend to credit whatever they were doing last with their remission or recovery.

The point (at least as far a is, can it be proven with a multi-patient blinded randomized trial?

Neither addressing stress nor CBT/GET can prove recovery (with any normal meaning of recovery) in large randomized blinded trials. Not sure about the evidence for stress treatments for disease in general, but CBT/GET for CFS can't even prove it has a more beneficial effect than a placebo would show.

And there's a substantial potential for harms from GET (and some amount of harm from CBT, partly because it tends to incorporate GET, and probably partly because if one gets the kind--as it would be at King's--that tells one to think one is well when one really is sick, that can be damaging both physically and emotionally, as well as destroying to family and other relationships)
Tom's paper:
http://www.iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx
Interview with Tom:
http://phoenixrising.me/archives/15567
New survey:
http://www.iacfsme.org/LinkClick.aspx?fileticket=PuRykxCauTk=&tabid=119

As the others said, your activity would increase as you improve, which is more likely than not (most people have a relapsing/remitting course and don't stay at their worst spot). Some people improve with pacing, and additionally some find a treatment which provides some amount of benefit.

 

[MeSci]

As the others said, your activity would increase as you improve, which is more likely than not (most people have a relapsing/remitting course and don't stay at their worst spot). Some people improve with pacing, and additionally some find a treatment which provides some amount of benefit.

Yes - many of us have experienced improvement from better pacing (e.g. with the help of a heart monitor), supplements and dietary adjustment.

Please don't give up hope of walking again, @Spinney Lainey. Avoid forcing your body to do things before it's ready. It will tell you when it is - e.g. in the form of muscles feeling stronger and wanting to be used, and working well when they are. And you will hopefully be able to differentiate the jittery, nervous 'false energy' that comes from adrenaline surges, from the calm, healthy energy that comes from real physical improvement.

I think a lot of us have started to doubt ourselves in the face of so much misinformation from doctors and others, and some of us have followed the wrong advice from them and lived to bitterly regret it, hence the high level of anger amongst people with this illness.

 

[Spinney Lainey]

There are specialists who treat ME/CFS as a biological disease and test for and treat infections, deficiencies, etc. One is Dr Myhill in the UK, and another is Dr de Meirleir in Belgium.

Am actually very sceptical about these too, as most of their protocols don't seem to be based on sound scientific evidence, as far as I can gather...........