Anyone had experience being treated at King's College London?

[PandaDarling]

Hi all,

I have been referred to KCL to their CFS clinic and it was brought to my attention that I'm entering the lion's den :/

Has anyone been treated their or can elaborate on what to expect? The person in charge is Trudie Chalder. Don't know if that name rings a bell with anyone.

I have anxiety over my illness anyway as it is (and generally within my mental health struggles) so I want to be as prepared as I can!

Thanks all

 

[Snowdrop]

Seems to me that you have an already developed sense of what you're looking for with regard to your illness.
http://www.diaryofabrokenmind.com/category/cfsme/

 

[Snowdrop]

There a a vast amount of information here on PR regarding biological treatment and research into ME.
Since you are new here I would encourage you to examine the info on ME to better assess your treatment options.
And become familiar with different research happening elsewhere outside the UK.
Here is a good place to start:

 

[snowathlete]

Hi PandaDarling, as a fellow ME/CFS patient who underwent treatment on the NHS myself before I knew more about my own disease, is to be very careful with NHS treatment and especially those you are told are experts. I was given CBT and GET under the NHS and the CBT was a bizarre waste of time while the GET made me bedbound for a long time and I never fully recovered from it. The clinic were not interested in the harm done and simply discharged me.

KCL in particular were involved in a very expensive (publicly funded) and very poorly conducted study (PACE) which published very questionable results. Patients, journalists and academics are all trying to get hold of the original data from the study as what we have seen so far suggests that the data they have kept hidden may be important in understanding the true effects of their treatments. This has become a high profile situation as KCL and their partner university QMUL have refused to release any data on the basis of a handful of different excuses including claiming that anyone who wants the data is being vexatious and harassing them, even though they originally said they would publish this data in their study protocol. It looks like they changed their mind when the data didn't support their hypothesis. Trudie Chalder is one of the authors refusing the release of that data.

There are blogs on this topic and a lot of information on this forum. I suggest you read up on it before committing to seeing them as they may make your health worse and the evidence that they can make you any better does not exist. They consistently make claims that these treatments are good and safe, but their own data (the little they have already released) actually shows that the treatments are not effective; so you cannot rely on their claims, but of course many patients (including myself at one point) just assume they know what they can be relied upon and the treatments are safe and based on evidence. Not so unfortunately.

Good luck.

 

[Keela Too]

I was offered GET. I turned it down.
Check out what the ME Association says. Also click through to see the results of their survey. 74% of respondents claimed GET made their symptoms worse! http://www.meassociation.org.uk/2015/05/23959/

 

[alex3619]

Trudie Chalder is one of the major CBT/GET proponents, and is happy even using that therapy on children. Its not the Lions Den. Its the den that even lions run away from.

 

[A.B.]

CBT and GET and the underlying illness model are a sham with no convincing scientific basis. Chalder and colleagues have been producing studies that claim it works but upon closer examination their methods are flawed and the results exaggerated. There is no reason to believe it works. Patient association surveys report that CBT and GET often cause deterioration of health.

 

[hamster336]

Hello PandaDarling...I was treated there a few years ago.
They will focus a lot on your BPD I suspect, and you will be 'helped' to come to the conclusion that your anxiety is a causative factor.

You will focus on unhelpful beliefs and behaviors that they feel are perpetuating your symptoms...For example I learned that chain smoking was unhelpful.....

You will fill in A LOT of questionnaires because that is how they measure your progress.

Read everything else people have written here. Basically they think that your physical symptoms are a result of your faulty beliefs which is insulting in the extreme.

That being said, my counsellor was nice and listed sympathetically while I cried

 

[taniaaust1]

Yes I think most of us have heard of Trudie Chalder and from what we know about her due to what she's been involved in etc. we don't trust her at all. That place is somewhere we generally wouldn't go to for ME/CFS, I have classical like ME so know I wouldn't, its something I know she cant help with.

With that being said I don't know enough about your ME or CFS to advise. If you fit something like the Canadian consensus criteria or the international ME definition, I say certainly avoid going there as you may end up much sicker. If though you fit more like simple CFS definitions eg what some refer to as just "chronic fatigue" and don't get the delayed post exertional reaction to exercise and the whole symptom complex range of symptoms eg just mostly fatigue, well then maybe something CBT then may be helpful to you.

I strongly suggest to do more research on things and work out where you fit with the whole ME CFS stuff and the definitions and groups of this and only then make a decision to go to a place like that. Do take care. Going there could be dangerous but only you can figure that out if you look into things more.

 

[taniaaust1]

Hi again panda, I was just reading your blog http://www.diaryofabrokenmind.com/category/cfsme/ and from the fact you were able to do a marathon without severe repercussions and didn't mention you had any delayed PEM (post exertional malaise) with that, I'm thinking there is a very good chance you may be a in a different CFS subgroup then most at this website so peoples experiences may not pertain to you.

"Whether or not someone has a disability, visible or not, including mental and chronic illness, does not in any way mean that they should be judged for doing something, whether that be making a meal on their own or running a god damn marathon!"

Unfortunately you will find yourself judged when it comes to ME/CFS people doing marathons cause it isn't the normal at all. 25% of those who have ME/CFS are housebound/ bedbound not by choice. (I cant leave my home without a support person to push wheelchair, this isn't about who is worst, I'm trying to get across to you just how sick those with this illness usually are and marathons usually far out of the normal equation for this illness).

Generally those who have ME cant do aerobic exercise as we have something wrong physiologically which affects that so we get bad affects from it to the point that it just cant usually be done (there has been studies showing this. There is a list of physiological changes in us based on studies compared to people without this illness in the Canadian consensus ME/CFS overview document).

ME/CFS usually isn't something which can be pushed through (those which do that usually end up paying quite a price) and its this which helps define it more so from what is calling called "chronic fatigue" which also can be severe but just isn't the same thing. Chronic fatigue is all too often confused with ME or ME/CFS but ME has a post exertional worsening of a whole symptom complex (not just fatigue).

The UK what is know as the Wessely school of psychs out to help those with ME/CFS generally deal with those who have "chronic fatigue" . Trudie Chandler is in that boat so if its that you have, she may be right for you.

Whatever you do, I hope you find something which helps you.

 

[worldbackwards]

The UK what is know as the Wessely school of psychs out to help those with ME/CFS generally deal with those who have "chronic fatigue" . Trudie Chandler is in that boat so if its that you have, she may be right for you.

But isn't it fair to say that there was a fairly broad CF contingent in PACE and they were no better off than anyone else? I'm not really sure that they're any good at dealing with that either!

 

[cornwall13]

Ask her about the rituximab trial. And how that would fit in with the cbt/GET model

 

[PandaDarling]

Hi again panda, I was just reading your blog http://www.diaryofabrokenmind.com/category/cfsme/ and from the fact you were able to do a marathon without severe repercussions and didn't mention you had any delayed PEM (post exertional malaise) with that, I'm thinking there is a very good chance you may be a in a different CFS subgroup then most at this website so peoples experiences may not pertain to you.

"Whether or not someone has a disability, visible or not, including mental and chronic illness, does not in any way mean that they should be judged for doing something, whether that be making a meal on their own or running a god damn marathon!"

Unfortunately you will find yourself judged when it comes to ME/CFS people doing marathons cause it isn't the normal at all. 25% of those who have ME/CFS are housebound/ bedbound not by choice. (I cant leave my home without a support person to push wheelchair, this isn't about who is worst, I'm trying to get across to you just how sick those with this illness usually are and marathons usually far out of the normal equation for this illness).

Generally those who have ME cant do aerobic exercise as we have something wrong physiologically which affects that so we get bad affects from it to the point that it just cant usually be done (there has been studies showing this. There is a list of physiological changes in us based on studies compared to people without this illness in the Canadian consensus ME/CFS overview document).

ME/CFS usually isn't something which can be pushed through (those which do that usually end up paying quite a price) and its this which helps define it more so from what is calling called "chronic fatigue" which also can be severe but just isn't the same thing. Chronic fatigue is all too often confused with ME or ME/CFS but ME has a post exertional worsening of a whole symptom complex (not just fatigue).

The UK what is know as the Wessely school of psychs out to help those with ME/CFS generally deal with those who have "chronic fatigue" . Trudie Chandler is in that boat so if its that you have, she may be right for you.

Whatever you do, I hope you find something which helps you.

I had sever repercussions for what I did. I paid a massive price. I just didn't go into it. I can no longer exercise. A small walk is an achievement. Now I am housebound for most of the week and make it out a couple of days a week. Thank you for your insight into how you read my post.

 

[PandaDarling]

Yes I think most of us have heard of Trudie Chalder and from what we know about her due to what she's been involved in etc. we don't trust her at all. That place is somewhere we generally wouldn't go to for ME/CFS, I have classical like ME so know I wouldn't, its something I know she cant help with.

With that being said I don't know enough about your ME or CFS to advise. If you fit something like the Canadian consensus criteria or the international ME definition, I say certainly avoid going there as you may end up much sicker. If though you fit more like simple CFS definitions eg what some refer to as just "chronic fatigue" and don't get the delayed post exertional reaction to exercise and the whole symptom complex range of symptoms eg just mostly fatigue, well then maybe something CBT then may be helpful to you.

I strongly suggest to do more research on things and work out where you fit with the whole ME CFS stuff and the definitions and groups of this and only then make a decision to go to a place like that. Do take care. Going there could be dangerous but only you can figure that out if you look into things more.

I get the post excertion fatigue from doing the simplest of things these days Maybe I should have been more clear in my blog about the repercussions of what I did. I can no longer run. And I wasn't running before it either. It was something I had to do in a crazy attempt to take some control back. In my own bizarre way!

 

[PandaDarling]

Seems to me that you have an already developed sense of what you're looking for with regard to your illness.
http://www.diaryofabrokenmind.com/category/cfsme/

Hi, I'm sorry I don't get what you mean by this?

 

[PandaDarling]

Thank you for this

 

[PandaDarling]

Everyone seems to assume I didn't have sever reprocussions to this but I did. I pushed through and to the detriment of my health. It wasn't a clever move but I was grieving for loosing something I loved. In my own crazy way. I get PEM from just going to the shop these days. I'm sorry if my post offended or upset anyone. I am not bed ridden with my condition. There are always people so much worse off and this makes me feel like I should just shut up and 'get on with it' but surely on this forum we appreciate that everyone has different severities?

 

[Snow Leopard]

Hi, I'm sorry I don't get what you mean by this?

it was brought to my attention that I'm entering the lion's den

What more needs to be said?

They'll claim that oh yes, we believe that CFS has (in part) a physiological basis (but yet they will focus entirely on psychological factors) and oh no, you won't possibly have repercussions if you do what we tell you. (risk of being blamed or simply being told to go away if you complain about your health declining).

 

[alex3619]

I'm sorry if my post offended or upset anyone.

I cannot really speak for others, but I don't think anything you said was likely to upset anyone. I do think they may have been concerned, and wanted you to understand that a diagnosis of CFS or sometimes even ME is not always accurate, and other treatments may help you if you have something else wrong with you. The misdiagnosis rate in the UK is about 40%, which is rather high. Its important to look at all the possibilities.

Highly active to struggling to do shopping is a common story for ME and CFS. In the 90s I struggled to go grocery shopping twice a month. Lately once a year is good, and I have had to find alternatives.

There are no guaranteed treatments, sadly. Even diagnosis is problematic. There are things you can do though. Most of them are being discussed on one thread or another in this forum. Its a lot to take in, so take your time.

You might want to look up information on the Rituximab trial. If the phase 3 trial is successful in Norway, and replicated in the UK and the US and maybe elsewhere, then we may have a treatment that can in some cases restore full health. However its still years away.

There are threads here on things doctors can do, but unlikely to be available in the UK, and other things patients can do on their own initiative. These range from diet and supplement ideas to ways to manage energy such as pacing (which is NOT the same thing as in the PACE trial). Take your time, ask questions, and remember that there are thousands of people reading this forum who are also looking for answers. Collectively most topics get discussed, if only briefly.

 

[worldbackwards]

Everyone seems to assume I didn't have sever reprocussions to this but I did. I pushed through and to the detriment of my health. It wasn't a clever move but I was grieving for loosing something I loved. In my own crazy way. I get PEM from just going to the shop these days. I'm sorry if my post offended or upset anyone. I am not bed ridden with my condition. There are always people so much worse off and this makes me feel like I should just shut up and 'get on with it' but surely on this forum we appreciate that everyone has different severities?

I wouldn't worry about it, I think it's just that you weren't clear. I think we can all see where you're coming from now.

It can be easy to get touchy about hearing people with ME running marathons when you hear trivialising stories in the Mail and suchlike about "How I cured my ME by jumping in the sea", because people suspect it will be used against us in that way. As such, perhaps we can be quick to jump to conclusions rather than hold fire and ask a few pertinent questions.

Most people have been unable to engage in sports since they became ill, but there are others on here who have attempted to keep up with exercise and the like, although as you found out it usually doesn't end well. It's easy to pretend you haven't lost the ability to do stuff when you wish you could and everyone else wants you to pretend that's the case.

Me, I was told early in my illness that I would give up my university course and use this as an excuse to hide away from the world, and that I should get a job and "stop thinking about the philosophy of life too much". So in a bloody minded, 'I'll show them" spirit, I got a job and spent 18 months finishing my degree. I ended up severely affected and barely able to walk by the end of it. It's not unusual to manage your illness badly, it's just best not to.