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

[Keela Too]

I can look back on my ME history and note various places where I dipped after an event, but never recovered the ability I had prior to that event. Some events were down to me being naive - others when I was being thran, and "not letting this beat me!" (Not a good idea. )

One of those thran times was when I got the only clear round I've ever achieved in Agility competion with my dogs. I was already using a mobility scooter to compete, and this was a 2nd round when normally I stopped at one....

Do I regret doing it? Actually no I don't, because sometimes this illness just throws me down through its own bloody-mindedness.

Will I again risk "pushing" as much as I did that weekend... NO I won't! Hard learning curve this ME lark. xx

 

[hamster336]

I think you have to try not to worry about what other people about this illness. They will NEVER understand. Nor will they understand how mentally strong we HAVE to become.

 

[Effi]

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 get where you're coming from. In the case of slow onset ME (as opposed becoming bedridden from one day to an other), it is easy to do things that seem crazy in hindsight. The thing is, in the beginning most of us didn't even know what we had, or what was going to happen. Every test comes back clear, so you just try to brush off your exhaustion and all other symptoms, and just carry on. I used to play competitive rugby, and in hindsight I was already sick, barely making it through a game, almost passing out during practice. But my doctor kept telling me I was fine, so I kept pushing through on will power, steadily declining until I couldn't go any further.

 

[adreno]

I pushed through and to the detriment of my health.

If that is your experience I certainly wouldn't go to KCL, as you'll be likely to get advice (read pressure) to push through even more. Their whole treatment approach is based on this principle.

 

[Gingergrrl]

I cannot comment on King's College, and leave that for others who are familiar with it, but I relate completely to what @taniaaust1 was trying to explain. Like her I use a wheelchair exclusively (even inside the home now on most days) and cannot breathe when I stand. There are constant stories posted of people being cured by yoga, eating certain foods, running marathons, jumping into the sea, etc, and sometimes it just gets tiring to hear (or at least it does for me.)

I am already questioning my diagnosis so when I read of people with ME/CFS doing these incredible physical tasks, it makes me question my diagnosis even more! It's not in any way meant to be an insult, just further questioning on my part that adds to my confusion.

 

[PandaDarling]

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.

Thanks for this reply. It cheered me up. Yeah at the time I was so unhappy and had just lost my job that I wanted to give everything an 'I'll show you - I still have legs!' attitude to it and use the event to say goodbye to my passion untill one day I get better.

I also have fybromyalgia which means actually doing gentle (like really gentle walking or stretching) helps to relieve pain (for me personally) But it's safe to say my running shoes are well under the bed now!

 

[Valentijn]

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.

It's one of the hard-core centers for CBT and GET in the UK. The practitioners espouse a "BioPsychoSocial" (BPS) approach to disease, on the basis that psychological and social factors can impact biological disease. But then they claim that the biological disease is long gone, and all that remains are a false belief that we are ill, and maladaptive (sedentary) behavior which produces physical symptoms.

So they basically equate PEM with DOMS (Delayed-Onset Muscle Soreness) which everyone gets when starting a new workout, typically after being inactive for a week or two following a real viral or bacterial illness. Then they propose that those who fail to recover and go on to develop ME/CFS have suddenly developed a hysterical reaction to normal DOMS symptoms, and react to those symptoms by resting more, and somehow making ourselves even more disabled in the process.

I'm sure you can see that this hypothesis has far more holes than substance, but it doesn't stop the practitioners from treating it as holy writ and vehemently denying any other possibility, no matter how well-supported by scientific research.

There are several researchers in the UK who are the most active in "researching" (closer to creative writing) and promoting these theories: Peter White, Simon Wessely, Michael Sharpe, Alison Wearden, and Trudie Chalder. Chalder is the basically the George W Bush of the group. She is a very enthusiastic and vocal supporter of the BPS model (probably a true believer, rather than a insurance industry shill or using it for career advancement), but with a tendency to say hilariously stupid things from time to time.

It's probably a complete waste of time to go, unless you're bored and want some cheap entertainment, and there's no risk of them getting under your skin. If you do go, take a tape recorder so you can transcribe the dumber bits and share the entertainment with the rest of us

 

[A.B.]

If you do go, take a tape recorder so you can transcribe the dumber bits and share the entertainment with the rest of us

I'm curious how they deal with patients when they think nobody is watching. Or how explicit the illness denial gets once they think they have the patient on the hook. It must be easy to abuse sick patients that have been filled with self doubt and be told they must believe things that don't make any sense if they want to get better.

 

[Chrisb]

Chalder is the basically the George W Bush of the group.

If Chalder is the Dubya of the group it might be best when dealing with them to recall Reagan's favoured saying - "Trust, but verify".

 

[PatJ]

I also have fybromyalgia which means actually doing gentle (like really gentle walking or stretching) helps to relieve pain (for me personally)

You might want to look into LDN for pain reduction with fibromyalgia (and it usually improves sleep, reduces brain fog, and has other benefits for CFS.) LDN is usually also beneficial for people with anxiety, although sometimes it can increase anxiety if a person increases the dose too quickly, or reacts to the fillers used.

It's possible to get it online without a prescription. I'm not sure about UK law regarding importing LDN. There are several threads here on PR about LDN, and mentions of it in other threads. The PR Google search will turn up many results.

 

[PandaDarling]

You might want to look into LDN for pain reduction with fibromyalgia (and it usually improves sleep, reduces brain fog, and has other benefits for CFS.) LDN is usually also beneficial for people with anxiety, although sometimes it can increase anxiety if a person increases the dose too quickly, or reacts to the fillers used.

It's possible to get it online without a prescription. I'm not sure about UK law regarding importing LDN. There are several threads here on PR about LDN, and mentions of it in other threads. The PR Google search will turn up many results.

Thanks for this advice - I shall definitely look it up. I need to be careful with drugs because I am on psycho-active medication too (when I have bad flare ups with the MH i have to take anti-psycotics and I'm permanently on SSRIs). I don't mind taking them tho - as bad as the side effects can be - they have been life saving at times. Just FYI before people feel the need to (possibly) tell me how bad they are.

What is LND? I did a google search but it brought up nada (probably because I am in Germany at the moment).

Ta x

 

[PandaDarling]

@PatJ Apparently LND isn't available through the NHS in the UK. Hopefully it is legal to import though when buying online. I'd need to find out if it has any interactions with my other medication. And I'm guessing I'd need to come off my oxycontin pain meds. I only take 10mg x 2 daily every 12 hours (slow release) but they are still a bugger with withdrawal as I have been on them for about a year (Its all the help I got from my GP).

 

[PandaDarling]

It's probably a complete waste of time to go, unless you're bored and want some cheap entertainment, and there's no risk of them getting under your skin. If you do go, take a tape recorder so you can transcribe the dumber bits and share the entertainment with the rest of us

You know what? I think I might just do that!

 

[Sushi]

Apparently LND isn't available through the NHS in the UK. Hopefully it is legal to import though when buying online. I'd need to find out if it has any interactions with my other medication.

It is LDN--Low dose Naltrexone and yes, it will interfere with any opiates.

 

[PandaDarling]

Hang on, you can get LND prescribed in the UK, just not for CFS .... Hmm.
Although there is an article in the BMJ regarding it. Will see if my other half can get me a copy (he is an immunology phd of all things ^_^) http://www.bmj.com/rapid-response/2011/11/02/cfsme-patients-response-low-dose-naltrexone

 

[Sushi]

Hang on, you can get LND prescribed in the UK, just not for CFS

You might be able to get it for Fibro -- http://lowdosenaltrexone.org/

 

[Jonathan Edwards]

I like the 'trust but verify' idea. Since you are wanting to explore anything available and maybe also not wanting to appear ungrateful to whoever is suggesting King's I would go along and see what is on offer unless you feel very intimidated by it. A tape recorder would be interesting. I have had patients tape interviews with me and I appreciated that they wanted to record the details of what I said.

Dr Chalder may for all I know be able to offer some people useful help. The trials she has been associated with do not impress me, and nor do some of the transcripts of some of her pronouncements I am afraid. I think you should go armed with information that a number of academic doctors are not convinced by the evidence she finds so convincing. You may wish to question that evidence if treatments are suggested. I am not sure how far you will get but I don't want to prejudge. I suspect that if you are listed to attend her clinic you may not see her personally, so it is hard to predict how you will actually find things when you get there. I too would be interested to know how you get on.

 

[taniaaust1]

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?

sending you a **hug**. Werent trying to judge you, obviously you have more then just "chronic fatigue' by what you've said now thanks.

As advocates for this illness which many of us are, we need to make sure people don't confuse CFS with what is called chronic fatigue or other things as that has caused much damage to our community and been quite harmful so hence people will question if it isn't clear that someone is getting post exertional symptoms while doing major feats.

It is quite relevant to know where people fit with things before giving out any advice or recommendations if they ask. 40-50% get misdiagnosed (one ME expert (Dr Brian Hyde?) put it at 50%) so I personally don't like to just assume. Over the years some at this forum have been helped by finding out they have other things and not ME/CFS though peoples caution and comments when something wasn't sounding right.

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

It didn't do that, just drew some cause of concern till we knew more. All the best.

 

[taniaaust1]

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!

true.

We do get the occasional person here who has been diagnosed with CFS who swears CBT and graded exercise helped them (they usually stop posting here quickly due to the responses) and hence I wasn't judging Trudy Chander as hashly as I probably should be. Thanks for point this out.

 

[wastwater]

Did the old definition of BPD mean borderline line schizophrenia I still wonder.
I've seen BPD described as a misnomer and a common misdiagnosis on the way to a diagnosis of Autistic spectrum disorder.