Daily Mail announces CF (CFS?) and fibromyalgia reclassified as BDS by WHO

[alex3619]

Attributed to Aldous Huxley, 1952, " At least two thirds of our miseries spring from human stupidity, human malice, and those great motivators and justifiers of malice and stupidity, idealism, dogmatism and proselytizing zeal on behalf of religious or political idols."

 

[AndyPR]

As we know items appearing in the Daily Mail may be 16 years out of date. Perhaps this is just a hidden "Guess the year" challenge.

Lol, good point but I did double check to see if it was dated.

 

[Binkie4]

http://forums.phoenixrising.me/inde...y-terms-pvfs-bme-cfs.49549/page-4#post-826256

Discussion taking place on this thread about the Mail article.

 

[SilverbladeTE]

Check the history of the Daily Nazi, er, Daily Mail
been a scum rag of the most despicable type for about a century

etc etc
THAT is the kind of filth behind all this.
always about inhumanity power and greed
victims "type" isn't important, just that they are weak, can't fight back and easily scapegoated

 

[Hilary]

Felt obliged to join MailOnline in order to comment - preferable to kicking the cat(s)

 

[Hilary]

..although frustratingly (as it takes me a while to organise my thoughts into print) it hasn't appeared - anyone know how long it takes? Is there usually a delay??

 

[alex3619]

..although frustratingly (as it takes me a while to organise my thoughts into print) it hasn't appeared - anyone know how long it takes? Is there usually a delay??

If its moderated there might be a delay. Its usually just hours but it can be more than a day.

 

[Hilary]

Thanks @alex3619 - this sort of article makes me want to throw my laptop out of the window - not conducive to a patient state of mind..

 

[Countrygirl]

Thanks @alex3619 - this sort of article makes me want to throw my laptop out of the window - not conducive to a patient state of mind..

Excellent therapy for hypotension though.......not so good for those of us who now swing the other way. (Popping another calcium channel blocker. The events of today demand it)

 

[hixxy]

Excellent therapy for hypotension though.......not so good for those of us who now swing the other way. (Popping another calcium channel blocker. The events of today demand it)

Not if stress causes your BP to drop.

 

[TigerLilea]

I like they included interstitial cystitis in there. I'd love to hear more about how they think bleeding and inflamed bladders stem from the mind.

Exactly! I had to have a bladder biopsy to rule out cancer as my bladder was inflamed and my urologist wanted to be certain that he was making the correct diagnosis of IC.

 

[Countrygirl]

For your entertainment...............(bit of an exaggeration ) .......here is a set of slides and lecture notes that Per Fink (Karina's doctor) is using to brainwash/'educate' the UK medical profession in the 'management' of all things MUS. CFS is dealt with on page 121.

http://web.archive.org/web/20040908192433/http:/www.auh.dk/cl_psych/term/TERM-UK/term-dias02.pdf

Text on page 121 (Quotes Wessely 1995...................nothing has moved on since then apparently)

To illustrate how to avoid the discussion of the cause, I find this figure of Simon Wessely very illustrative. He works with chronic fatigue syndrome. We don’t know the actual cause for that, but many patients think it is a virus. You can explain the patient that we don’t know the fundamental cause for CFS, and that there is no medical treatment for it. However, there are other ways to get better, no matter what the cause is. Many rest when they are tired, because they are afraid of getting worse if they are active. Due to lack of exercise, the muscles become weaker, and the patient may perceive that as a sign that s/he has become even more ill, and therefore needs even more rest. The vicious circle goes around. Explain the patient that no matter what causes the fatigue, we know that it is important they remain active to avoid a worsening of the condition. Be aware, that this a good illustration of the either/or way of thinking failing. The cause in unimportant because we don’t have any causal treatment, but we can do other things to make the patient feel better.

 

[Jan]

Where the feck did they get the idea that all we do is rest, it really pisses me off? Most pwme I know never give up trying to increase activity and they are desperate to do more, as they improve a little they become more active. Also many can't rest as much as they need as they have to do many things in order to survive, maintain hygiene etc. Most pwme don't have 24hr carers attending to their every need, or any care at all for that matter.

Yes, 25% are severely ill and bedbound, and they have my greatest respect and sympathy, but that is due to illness severity not fear avoidance. Where is their proof for this fear avoidance anyway?

 

[dangermouse]

Where the feck did they get the idea that all we do is rest, it really pisses me off? Most pwme I know never give up trying to increase activity and they are desperate to do more, as they improve a little they become more active. Also many can't rest as much as they need as they have to do many things in order to survive, maintain hygiene etc. Most pwme don't have 24hr carers attending to their every need, or any care at all for that matter.

Yes, 25% are severely ill and bedbound, and they have my greatest respect and sympathy, but that is due to illness severity not fear avoidance. Where is their proof for this fear avoidance anyway?

I wholeheartedly agree with you. I'm appalled, disappointed and ..well, lack of energy and brainpower (words can't describe how difficult it is to function without a spark plug) mean that I can't think of ways to describe how I feel.

What I do know is that during the 11 years that I've struggled with/against ME I've never given up trying (to my detriment). I do not recognise myself in how ME/CFS patients are described, I have never avoided something "just in case X happens", I am not fearful of trying activity (though PEM should make me that way as its horrendous). If I am guilty of anything it is of trying to do more (carefully, with slow increases) time and time again, mostly because I want my life back.

On rare occasions when I get a glimpse of what it may feel like to have energy I get so excited and have hope that I shall have my life back, unfortunately energy isn't around for long.

I don't rest because I'm "tired". I literally have nothing in the tank and feel dreadfully unwell. If I have fatigue on top of that I don't have a choice whether to rest or not, I simply can't do anything. Oh, I've also stupidly tried to ignore symptoms and pushed myself on (on numerous occasions), I don't need to tell anyone here what PEM is like and I wouldn't wish it on anyone.

Before I developed ME my rationale to illness was to gradually recondition myself, hydrate, eat well, rest well...all was well. I was a nurse, no stranger to illness and recommendations for healing and recovery and better health. My initial reaction to ME was to try my usual recovery ritual (from when I was not ill with ME), however when I tried to do anything the impact it had was to weaken me further and to the point of collapse. As it is drummed in my head (all this work through it, push on, think positive, get on with it) I've tried again. And again. Part of me hoping that this time would be "it" and I'd be better, each time it's taken longer to come out of PEM and the effects have been more and more debilitating.

 

[Jenny TipsforME]

Oh dear "patient with fibromyalgia, who experiences widespread pains, may suffer fatigue, while someone with chronic fatigue syndrome can have muscle aches."
Yes BUT these are just labels for broad symptoms, it doesn't mean that they have the same cause or even feel the same! This sounds like a medical disaster, a great ocean liner on course for collision. Focus should be on teasing out subgroups not lumping every illness in together and treating it as the same problem

I've been attempting not to get stressed by the huge MUS heading towards me. But it is hard to ignore this

Psycho babblers trying to plug the gaping holes in their rapidly sinking ship?

I think the UK is prepared to drain the ocean dry rather than allow this particular ship to sink.

The ship just keeps getting patched up, but it isn't at all convincing as a repair and I certainly don't want to sail in it!

Excellent therapy for hypotension though

Yes it works, I just checked my BP and it's 115/78. I'm usually more 80s-90s/50s-60s. Well it's useful for something then!

Where is their proof for this fear avoidance anyway?

I do attempt to examine myself in as open minded a way as possible (not very possible as we all have biases). Yesterday I was thinking about this on the way back from the hospital on the way to a shop. I hadn't been out since a previous hospital appointment in January. I was enjoying being out (after the EMG was done with) and noticed I didn't have any anxiety about being out. I was thinking "I should try to get out a bit more". Going to a shop as well was unwise but there are some things which are difficult to buy online. I suddenly ran out of immediate energy in the shop (I've got an electric wheelchair so not a disaster). Today I've got PEM and feel exhausted, which is predictable. I don't think I'm prone to all-or-nothing thinking either (another form of blaming the patient), mostly my pacing is more sensible than this.

Something else I was thinking about recently is with all the psychological angles that are suggested, sometimes by the same people, who would avoid all these things? Who is:
Neither doing too little nor a workaholic
But also neither fearful of aggravating symptoms nor over doing it in all-or-nothing behaviour
But not over stressed due to socioeconomic circumstances nor a privileged yuppie expecting more from life
But also not too aware of symptoms nor too prone to blocking out symptoms and pushing on through
Neither uninformed about coping strategies nor obsessed with getting medical information
Neither worse through lack of social support nor due to pressure from family
Neither prone to learned helplessness nor a scary patient trying to dominate appointments
Neither lacking motivation nor finding it difficult to accept they can't do more

Wouldn't everyone fit one or more of these categories if they got ME? It doesn't say anything about the illness except that humans get it!

BTW I do agree that no illness is 100% psychological or biological. I've studied BioPsychoSocial theory and PsychoNeuroImmunology at uni. I just don't feel like these ideas are being used in an honest way in UK public policy. It is not holistic to then treat everything as psychological. That is the opposite of what they're quoting and leads to very confusing articles like this one.

 

[Invisible Woman]

I do not recognise myself in how ME/CFS patients are described

I had an interesting conversation with a consultant about this a few years back. He saw quite a few ME patients and he reckoned that none of his ME patients fitted the descriptions/profiles that SW and his cronies use.

But then he didn't rely on skewed or biased questionnaires with leading questions (the ones I have seen seem, in my opinion, to be designed to elicit a certain outcome). He spent time with his patients and got to know them. Unlike others I could mention his main goal was helping his patients. He wasn't bothered about the empire building and limelight hogging that others indulge in.

 

[dangermouse]

I had an interesting conversation with a consultant about this a few years back. He saw quite a few ME patients and he reckoned that none of his ME patients fitted the descriptions/profiles that SW and his cronies use.

But then he didn't rely on skewed or biased questionnaires with leading questions (the ones I have seen seem, in my opinion, to be designed to elicit a certain outcome). He spent time with his patients and got to know them. Unlike others I could mention his main goal was helping his patients. He wasn't bothered about the empire building and limelight hogging that others indulge in.

It's refreshing to hear of a consultant like that. I was fortunate that the consultant who recognised ME for me was someone who knew me (and my work ethic and personality) prior to becoming ill.

 

[slysaint]

The ship just keeps getting patched up

The OHC are into the nautical theme as well:
http://www.theoptimumhealthclinic.com/2017/03/captain-the-ship-of-your-own-recovery-2/

just in case anyone was wondering what is on offer:
"To find out more about Psychology at The Optimum Health Clinic, please click here"

Disclaimer: I am not recommending the OHC

 

[Jenny TipsforME]

Ha, I'm actually quite fond of Alex Howard. I watched a lot of his videos when I was very sick, bedbound and unable to read so couldn't access other information.

It's basically like a scenario where a number of people on PR recover and decide to set up a clinic using ALL the ideas discussed on PR! There's actually quite a lot of good advice in there but you have to pick it out from the wacky fillers. For example, I like how they describe Bouncing the Boundaries version of Pacing. I didn't engage with EFT, tapping didn't seem to do anything other than use up my energy.

I didn't have any psychology sessions mind you. I watched videos and had nutrition sessions. The nutritional advice was pretty similar to what you'd read on here, but more personalised to my blood tests etc. It did appear to help me. I'd had months at bedbound level and was then housebound-but-not-bedbound within 2 weeks. I'm not sure why, it could be as simple as the nutritionist looking through my normal diet and noticing that I'd accidentally cut out salt (I had undiagnosed POTS). I also started a number of supplements.

Like Dr Myhill, they've been talking about mitochondrial issues and relevant supplements for years. They don't think ME is psychological (as it could sometimes appear). They're doing more what biopsychosocial used to mean, in terms of being holistic and taking into account different layers of explanations. OHC would be better received if it didn't exist in the context of CBT/GET (and I don't think they really address this political context).

In terms of this specific video, I think he's describing how it is now, but I have mixed feelings about whether this is what to aim for. I think most pwme are ill enough to appoint a different Captain ‍✈️ in a keyworker role to coordinate biomedical care. It shouldn't have to be down to our organisational and research skills. We are very ill.

 

[Jenny TipsforME]

huh should have been sea captain not pilot!