Crawley: How to deal with anti-science BRS2017

[lilpink]

I believe it is far more important to stand up and say "This tent/big tent/swamp" is rotten to the core and I won't sit round a table that enables this kind of behaviour."

So do I ..so do most of my ME friends.

 

[Barry53]

I care not one whit about Ms Crawleys (for example) personal life, or her professional life outside CFS/ME.

Any campaign against Ms Crawley on the basis that she is an evil woman, or that she should be sacked due to her beliefs is not something I would support.

I agree 100%.

This is not a 'Campaign against those conducting', it's a 'Campaign against the research that happens to be conducted by'.
A subtle, but important distinction.

Again, I agree 100%.

 

[JaimeS]

Hang on. I thought we were all supposed to be driven, over-achieving perfectionists?

BPS theorists:

The photo on the left is of a poor family living in Armenia.

Wow.

Makes it even more disturbing to me that the 15 year old Maria has cerebral palsy.
It is all so distasteful and disrespectful towards the people in both photographs as well as to the patient community that it is hard to put into words.

It just means Crawley is equal-opportunity.

Psychiatry is not confusing. It is flexible, adaptable, dynamic, moving on, entering an exciting new era, boldly facing the challenges of modern life and working together with the community to offer exciting new products, delivering an exciting new family-friendly future

Brilliantly put, @Sean ...

It's not confusing from where I'm standing, either. It's horrendous, but pretty clear.

Wins the internets, @Luther Blissett .

"Illness terrorists" sounds appropriately menacing!

 

[2kidswithME]

ETA, thanks @Forbin for finding the source of the photo. (Might someone wish to let World Vision know someone has misused their photo? They do great humanitarian work in very difficult places.)

On further reflection I decided to write EC herself about using the World Vision photo, as it made me very angry. I've now done so, suggesting she apologise and send a generous donation towards their work in Armenia. I decided to copy World Vision Armenia and world vision U.K., so they are aware she has misused their photo, almost certainly without permission. In the unlikely event that EC responds, I'll post the response, after I've picked myself up off the floor!

 

[Esther12]

I always feel a pang of fear when a decision to send an e-mail is made when very angry... hard to get the tone of them right!

 

[Art Vandelay]

BPS theorists:

As I've noted on PR before, a psychiatrist asked me if I had been sexually abused, bullied or had otherwise had a traumatic upbringing because he 'wanted to work out what caused my CFS'.

I replied that I had experienced none of those things and, in fact, I'd had a very happy childhood. So he claimed that my parents had loved and coddled me too much which, of course, caused my CFS.

Basically anything you say can be twisted to 'prove' their claims. It's a great example of an old tactic used by other charlatans like fortune tellers, mediums and psychics.

 

[2kidswithME]

I always feel a pang of fear when a decision to send an e-mail is made when very angry... hard to get the tone of them right!

Too true, @Esther12 I can assure you I was very measured and focused only on the one photo, nothing about the gist of the talk, which I know others have taken up with her, or even the other photo, since the person behind that photo is already aware of the issue. It happens I used to work with a different multinational charity, and lived in some places where WV does humanitarian work, so the misuse of that photo was appallingly poor, if not illegal (breach of copyright).

Almost certainly someone else sourced the photos for her, but they should have been briefed on appropriate sources, and/or EC should have checked to ensure they were legit before using them in her slide.

I think the (seeming) lack of care about the photos reflects the wider issues around her lack of care with research, and indeed the lack of respect shown for persons with ME, etc., etc.

 

[trishrhymes]

Thank you @2kidswithME for taking action on the use of the photo described. I am very disturbed that she should so misuse a photo of what appears to be a dignified and loving family living in very difficult circumstances, and placing it alongside words like drug abuse and crime. The implied slur on that family is appalling. Do let us know whether you get a response.

 

[Solstice]

As I've noted on PR before, a psychiatrist asked me if I had been sexually abused, bullied or had otherwise had a traumatic upbringing because he 'wanted to work out what caused my CFS'.

I replied that I had experienced none of those things and, in fact, I'd had a very happy childhood. So he claimed that my parents had loved and coddled me too much which, of course, caused my CFS.

Basically anything you say can be twisted to 'prove' their claims. It's a great example of an old tactic used by other charlatans like fortune tellers, mediums and psychics.

Sounds all to familiar. In a talk I had with a psychologist for benefits it went something like this. "Well you say you don't get out much, sounds like you're depressed". "Well, actually I've saved up all my energy and went to a footballgame just 2 weeks ago, as I really like undertaking stuff, but rarely can". "How did that go"? "Well, it was very much fun for me, allthough offcourse I was spent for some time after that".

On my report: patient doesn't manage energy well, should benefit from going to NKCV for a course of CBT and GET.

You just can't win shit like that, if I had not told her the story about the game, I would've been jotted down as depressed and offcourse in need of some good ol' CBT and GET.

 

[Somer]

Where do the figures 'most will recover in 6 months with specialist treatment but less than 10% will recover without it' come from?

Thanks

 

[Snow Leopard]

Where do the figures 'most will recover in 6 months with specialist treatment but less than 10% will recover without it' come from?

Out of a male cow's backside.

 

[Countrygirl]

Where do the figures 'most will recover in 6 months with specialist treatment but less than 10% will recover without it' come from?

Thanks

EC made it up and disseminated the information in the form of the flyer to paediatricians and GPs.

 

[lilpink]

Intense.

3.44 - "Well, that fits together doesn't it? What is a tent when you think about it? It's only 4 big oboes and an evening dress"

 

[Countrygirl]

From information for teens taking part in the MAGENTA study.

I have been searching for a statement in MAGENTA's study protocol which I have read before, which is relevant to this thread, but have not found it yet. In passing I have just highlighted the quotes below, but have now run out of steam not to mention the will to live after reading this stuff.


http://www.bristol.ac.uk/media-libr...tudy-docs/MAGENTA PIS 12-17 31082016 v0.9.pdf

Will I experience any side effects from taking part in this study?

We have used both treatments in our service and we are not aware of side effects (of GET). Studies in adults have also not shown that there are any side effects from these treatments.

For parents:

If you feel that your child is will not able to attend hospital appointments because they cannot leave the house this would mean they should not take part.

so youngsters with moderate to severe ME excluded...................thankfully.


Leaflet informing participants about GET and fatigue.
http://www.bristol.ac.uk/media-library/sites/ccah/cfsme/study-docs/GET Leaflet.pdf

EC in the study protocol:

http://www.isrctn.com/ISRCTN2396280...67&page=1&pageSize=10&searchType=basic-search

GET has been shown to be very helpful in adults suffering from CFS/ME; however there are very few studies which look at how effective it is in children, and whether it is an economical treatment option.

Participant exclusion criteria
1. Too severely affected to attend hospital appointments (and require a domiciliary assessment)
2. Referred for CBT at their first clinical assessment
3. Unable to attend follow up appointments

so if the child worsens, they are then excluded from the trial. Will the reason be recorded or ignored?

 

[lilpink]

So do I ..so do most of my ME friends.

I have made this suggestion in another thread. Seems a rather obvious way to proceed.

http://forums.phoenixrising.me/inde...gy-blog-post-may-3rd.51174/page-2#post-845731

 

[Maggie21]

I have made this suggestion in another thread. Seems a rather obvious way to proceed.

http://forums.phoenixrising.me/inde...gy-blog-post-may-3rd.51174/page-2#post-845731

Personally I like the idea of a poll and would definitely support it myself as I feel we need to let all ME charities know we are not happy they 'appear' to condone such hypocrisy and harm.

My concern would be that I find it surprising how many patients on ME forums are still unaware of or not really clued up about the whole PACE, BPS, EC, SW etc debacle. To be fair though there could be legitimate reasons. Maybe they are too ill to research further, maybe they fall for the any help is better than none approach. And again to be fair, early days I would have counted myself in that number - until I saw the light.

If we did go for that approach I would say we have to ensure that the background to the poll is made abundantly clear in some way.

 

[Countrygirl]

GET has been shown to be very helpful in adults suffering from CFS/ME; however there are very few studies which look at how effective it is in children, and whether it is an economical treatment option.

So says Dr Crawley, but................................

Kathryn's story .......................amongst so many others

http://www.stopget.org/2017/05/missing-more-pain-not-gain/

Basically, the exercises I was given were more than my body could handle on top of the demands of a reduced hour job, often working from home, and the activities of daily living. If I left the exercises till the evening, I had no energy to do them and so I did them in a morning before work.
The physio repeatedly had to reduce the exercises she’d asked me to do, I have kept diaries of my treatments, what I was doing, how I felt and how much pain I was in. I have discussed these with other ME sufferers since and it’s quite clear that the exercises were completely unsuitable given my circumstances and worsening of symptoms.

I continued to try to do the exercises daily, under the false belief that deconditioning was a cause of CFS, until I collapsed with severe ME about 6 months later. I’ve been severely affected ever since. I’m housebound, having to stay horizontal for 22.5-23.6 hours per day. I need assistance with activities of daily living.

I must be pushed in a wheelchair outside my home and sometimes need the wheelchair inside my home, when my legs just won’t support me to enable me to, say, use the bathroom.

I’m fortunate to have a house where most of what I need is within a 3 metre radius, I have a good supportive husband and parents who take care of washing, ironing, errands and taking me to appointments when my husband can’t. I frequently crawl or have to lie down, even when navigating those 3 metres.

I’ve been robbed of my life through following bad medical advice and their complete lack of understanding and knowledge about ME.
They should have known that over exertion causes Post Exertional Malaise (PEM) and PENE symptoms. They should NOT have been contributing to PEM and PENE.

I want everyone who gets ME to read my story and be warned – Chronic pain is NOT okay – it should NOT be masked by pain killers (for more than a few days).
– Chronic pain should be investigated properly, with an open mind and not under the assumption it is all in your head.

– “Pushing through” is NOT a solution – you should be easing back instead.

– There can be NO gain where there is pain in ME.

– Nausea when trying to eat is NOT okay. This is another sign of overexertion.

– Don’t be pushed into exercise if you feel worse during or afterwards.

– Be aware that a higher or lower pulse than usual can indicate a worsening of symptoms. Rest up!

What I’m able to do now, using heart rate monitoring
I’ve been heart rate monitoring casually for a year, more seriously for about 6 weeks. By keeping my heart rate as much below 60% of age-adjusted maximum heart rate as possible and pacing within a smaller envelope, I’ve been able to stabilise, reduce my symptoms and have more consistent days.

Using the Hummingbird Foundation scoring system, I used to have frequent days at 1%, now I can usually average out at 3%, with very occasional days at 5%, as long as they’re followed by “aggressive” rest. My new physio (who I have to speak with using headphones on a phone whilst lying down) has been amazing, taking a completely different approach, supporting my heart rate monitoring efforts and she only recommends one toe stretch, laid down, arms at my sides, 2-3 times a day – this being something I could achieve on my worst day to help reduce chance of deep vein thrombosis. She allows me long periods of time (8 weeks or longer) to adjust to the movement.

After several months (5-6), she then added in lying on my stomach to help build up my thigh strength. I’m fortunate to have found someone this amazing but remember it’s come at the cost of many others having first provided absolutely appalling advice. I wouldn’t be in this position now, if it weren’t for being repeatedly told that exercise is a “cure” for ME. Instead, if they’d given me the tools of gentle stretches with many rest breaks and the heart rate monitoring guidelines (per Workwell Foundation) that would have addressed my fatigue, chest pains, muscle pain, PEM and PENE, I swear I’d be in a better place right now.

 

[Wolfiness]

Where do the figures 'most will recover in 6 months with specialist treatment but less than 10% will recover without it' come from?

Thanks

I would say the Dutch FITNET? A thoroughly misleading claim.
www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/


PS The 8% recovery rate group were treated with conventional CBT/GET à la PACE. Srsly.

 

[Countrygirl]

http://www.stopget.org/2017/05/missing-more-graded-exercise-therapy-ruined-me/


Clark's story

The first time I knew for sure that something was wrong was after a swim. I was a regular swimmer, I was fit and in the prime of my life. I’d had a persistent sore throat for months but doctors couldn’t figure it out, so I just got on with it. A good swim always left me tired, but in a good way. This time, by the time I got to the changing rooms I knew something was very wrong. It was a body-broken tired.

The one other person in the changing room confirmed it wasn’t just me, asking if I was alright. I didn’t know, but I said I was okay, and half an hour later I had managed to get home. As soon as I got in I collapsed across the dining room chair, my torso on the seat, head lulling over the edge. I couldn’t move. I could barely breathe. My speech was slurred. My wife – we were only recently married – was going crazy with worry and I had to talk her out of calling an ambulance.

For the next year all I did was struggle to work, come home and go straight to bed from 18:00. I rested every weekend and used all my holiday leave for rest too. I had been exceptional at my job, won awards for my work, but my performance dropped significantly to the point where I was barely keeping pace with minimum expectations. I went to the GP a dozen plus times over this period, had loads of standard blood tests that all came back normal. Eventually my GP said she thought I had ME and referred me to an NHS specialist.

The specialist diagnosed me straight away, said it was definitely ME. She was a GP with a special interest in ME and she was decent. She was surprised I had managed to keep working and signed me off work for two weeks. Two weeks became a month. Then three months. Six months. A year. That was six years ago.

In my first few weeks I was given CBT. It was a bizarre waste of time. Then I was given graded exercise therapy (GET) – again, under the NHS clinic’s trained specialists. I raised concerns because walking from the car to the clinic had been very hard in itself, but was assured that it was safe. Ultimately, I wanted to believe them because I wanted to be able to get well so simply and I missed exercise so bad anyway. So I did exactly as instructed, starting with just 5 minutes on an exercise bike on the lowest resistance setting. At the end of those five minutes I felt okay, I could have continued. But I stopped as instructed. The next day things were very bad. I couldn’t believe that that small amount of exercise had done this to me. But it did and I never recovered from it.

I stopped the graded exercise at that point, it was physically impossible to continue anyway. I feel very angry about this having since read the papers myself, such as PACE and seen that the claims made are not backed up by evidence, and evidence of harms are buried. My NHS clinic subsequently discharged me following the failed GET, saying there was nothing more they could do for me.

I very much got the impression that I was a fact they wanted to bury. They wanted me off their books, off their list of responsibilities, so they could continue giving GET to others without having to acknowledge the harm they had caused me.

I have spent most of my time housebound since. I have lost my masculinity and found that society does not value physically weak men. I have a four year old daughter who I play with for five minutes in the evening if I can manage it, which I often can’t. My wife is my carer. I lost my career and the family income. My health trend is one of continual decline. I have to avoid activity, yet I am bombarded by symptoms and distractions are my only relief. I distract, like writing this, and then pay a disproportionate

 

[Dolphin]

Does anyone have the name and Twitter username of the young woman whose photo on a tennis court was used by Crawley. I have been asked for this by somebody for something. Feel free to private message me if you prefer.