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28th Sept: The cost of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to the UK economy

Snowdrop

Rebel without a biscuit
Messages
2,933
This is the main argument pro OHC being on the NHS. It could also benefit us too: we could do the nutrition side and get supplements for free and ignore other elements. The diet and supplements they suggest are pretty similar to what people suggest here eg emphasis on mitochondrial function, cutting down carbs.

Being ill as I am I really do appreciate that people want something, anything that will improve their functioning and help them feel even marginally better. There is absolutely nothing wrong with that. But over time as I've been ill I've come to think of all this as a distraction. A kind of diversion from the real business of spending money on working toward treatments that really do make a difference. Like how people now survive cancer and go on to live their lives. This is such an uphill battle for us.

@Jenny TipsforME Just read the rest of the post where you address this point.
 

charles shepherd

Senior Member
Messages
2,239
£3.5 billion seems awfully low, assuming the oft stated figure of 250,000 pwME in the UK, that's only £14,000 each. That's probably not even equal to the direct consequential loss of income on an individual basis.

This is an estimate from back in 2003 - so you first need to build in some inflation

I don't have the Bibby report to hand to check the figures that were used, including the estimate of the UK ME/CFS population (which may have been less than 250,000)

But the loss of taxation component would be based on the fact that a significant proportion (at least 50%, probably higher) of people would be economically inactive from the taxation point of view at the date they became ill

In addition, a significant proportion would not be making use of the NHS and others would not be claiming DWP benefits - because claims had been rejected

CS
 

Binkie4

Senior Member
Messages
644
I connected with PR in Dec 2015 but have never introduced myself. I didn't actually know there was a thread for doing that. I joined on the back of David Tuller's blogs, and we immediately threw ourselves into advocacy, reading more ( probably the other way round).

Perhaps if I'd introduced myself, I wouldn't have been welcome because I'd flirted with the enemy. I had joined AfME when diagnosed in 2008, and left when my eyes were opened. I did the Optimum Health Clinic 90 day course in 2013. By then I had improved a bit after some very good herbal treatments so that I actually got to London on 3 consecutive days. I couldn't have done that in my early days, and I couldn't do that now, mostly bedbound.

The OHC? Well I don't regret doing it, it didn't cure me but alongside @Jenny TipsforME, i found it more 'nuanced' than some descriptions suggest. I don't think it was a waste of money ( about £600, but you could spend a lot more on nutrition assessments, supplements, additional therapy). I never met Alex but I sure saw a lot of him on video. He is a businessman as I think @Keith Geraghty said. There are spin off courses to train as a ? Counsellor I think, not too sure. The sessions in London were led by someone recovered from " ME" ( many of you will be saying " chronic fatigue" and it may have been). I felt they were sincere in wanting to aid us towards recovery. There is more of a description of their staff in the Forward ME's minutes posted earlier by CS. One of the most helpful items was an introduction to the " maladaptive stress response" - see the earlier chart. Reminds me of Ron Davis' " cell danger response". They dealt with it by the usual ways of meditation, yoga, breathing, but with added techniques to aid removal of stress reaction.

It did help for a while. We had a nightmare terminal health problem diagnosed in a young family member and I needed to travel from the UK to NYC several times in the few months following-airports, hospitals etc, and I did it ok. I couldn't have done that before. I didn't collapse at the end either but holidayed in a remote bit of South Asia. I was significantly improved. But slowly and stealthily, the ME came back. And what makes my health worse now is learning about BPS, deceit, etc, etc, writing long letters, advocacy, all very stressful. Sometimes I think I shouldn't read about it any more because I feel worse, but I am not stopping now.

So the OHC. I don't believe it can cure ME. I believe its staff are well intentioned having recovered from cf, or maybe it was just the time for their disease to end. Don't go if you are emotionally dependent on being cured, but if you want to try in a fairly open minded way, some techniques or ideas that might help improve QOL, it might be worth a go if you can afford it. I didn't do the nutritional work and I rather wish I had but it meant extra appointments in the morning which I didn't have the energy for.

There is a big emphasis on calming your body's maladaptive stress. I found that helpful for a while. And on the diagram @Jenny TipsforME posted which I haven'ti seen before, look at mitochondrial issues sitting right by it.

I have no other alternative routes to confess!! And I must introduce myself properly.
 
Messages
15,786
I believe its staff are well intentioned ....
I don't - not the core staff, at least. The researcher that they hired to market their services is 100% in the psychosomatic group. She saw it as a problem that ME patients reject the psychological therapies that should cure them, and advocated adding in some nutrition, meditation, etc, solely to make it more attractive to patients.

They do not believe that any non-psychological treatments will help. When they use non-psychological therapies, it's solely a marketing ploy to attract patients who are not otherwise interested in their psychological treatments. They may hand out some supplements, but that's just an extension of the "I believe your symptoms are real" spiel we get from the CBT quacks. They do not think that their clients have a biomedical disease, and they are not honest with their clients.

Please see this post and the rest of the thread for more information. Arroll had her university block public access to her thesis after it generated interest on this forum, but I have a copy I can send you if you're interested.
 
Taxation income isn't counted as separate as it would be double counting - only potential pretax income is counted.
Ahh, that makes things a bit clearer for me now. We, and that is most definitely including me, haven't been clear enough in defining if we are talking about personal cost of ME, where lost earnings would apply, or cost to the economy/state of ME, where lost tax revenues would be counted, as they were in the study CS quotes.

You could make an argument for an economic multiplier effect for income tax, but the conservatives will hunt you and your family down if you do.
And I'm lost again, I'll have to go look up economic multipliers. :)
 

Binkie4

Senior Member
Messages
644
I don't - not the core staff, at least. The researcher that they hired to market their services is 100% in the psychosomatic group. She saw it as a problem that ME patients reject the psychological therapies that should cure them, and advocated adding in some nutrition, meditation, etc, solely to make it more attractive to patients.

They do not believe that any non-psychological treatments will help. When they use non-psychological therapies, it's solely a marketing ploy to attract patients who are not otherwise interested in their psychological treatments. They may hand out some supplements, but that's just an extension of the "I believe your symptoms are real" spiel we get from the CBT quacks. They do not think that their clients have a biomedical disease, and they are not honest with their clients.

Please see this post and the rest of the thread for more information. Arroll had her university block public access to her thesis after it generated interest on this forum, but I have a copy I can send you if you're interested.

Thank you for the post @Valentijn. I feel as though I've stepped on a hornet's nest, and having taken a quick look at the thread, realise it's a lot of reading and I will need to come back to it. I don't know Megan Arroll or of her. She was not part of anything I did or came across at the OHC. I think I'll give her thesis a miss.

I do need to say that there are two strong threads at the OHC, nutritional and psychological, or there were in 2013 when I was involved with it. I've already said that I didn't follow the nutritional route which I know did a lot of testing and recommendations for supplements because of the extra time it took, but I do sometimes regret it. At the least it might be a comparison point for lots of the recommendations on supplements on here. So there was certainly one other main treatment area besides psychology. Most of the people in the group I was in did have nutrition appointments.

The counsellor who led the group ( 8 in each group) was emotionally aware and sensitive and I found her helpful. I didn't get on with EFT which was one recommended psychological technique, but lots of people do.

I haven't been following the OHC for the last couple of years but will have a go at the thread you posted but not today.
 
Messages
2,125
OHC are very hot on the 'over-achiever' scenario but have also introduced subtypes (presumably to 'accomodate' clients/potential clients who do not fit into the category).
Subtypes include:
Helper Subtype
Trauma Subtype
Anxiety Subtype


Also "The clinic uses a combination of techniques influenced by The Lightning process, Reverse Therapy, N.L.P. and Hypnosis."
".....common psychological subtype in ME, CFS , Fibromyalgia and that group of illnesses".

Not quite sure what 'that group of illnesses' means unless they are jumping on the MUS bandwagon.
 
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Snowdrop

Rebel without a biscuit
Messages
2,933
I recognize myself. What treatment options are available?

Venting spleen although not the most productive long term certainly does do the job quickly. Then there's catharsis by proxy or vicarious catharsis not sure about the proper term ;) where I watch Nikita or Daredevil or something like kick virtual butt in very unsubtle ways. That helps. :D :ninja:
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
OHC are very hot on the 'over-achiever' scenario but have also introduced subtypes

Yes this is the type of thing I disagree with. It very quickly becomes patient blaming. perhaps I'm spending too much energy as a Trying to Understand Both Sides subtype ;) but:

On the other hand, perhaps a different way of using this type of idea is that every type of person will have potential pitfalls (though they happen to get ME for entirely non-personality related reasons).

An analogy is that every type of person will have tendencies in which they could manage parenthood demands badly. Some Helper types will give in to children's every demand, not teaching them to have concern for other people. Achievers will be pushy and demanding, bringing up children who feel inadequate. Some will be anxious helicopters whose children are naive to the real world or anxious themselves etc. If they gain self awareness about their personal tendencies they may be able to correct for them, though that is no guarantee of becoming a good parent.

Some OHC ideas could be reappropriated if you took out the idea of these subtypes as being causal. I do have Helper tendencies and I used to work for a disabled children's charity (with mild ME). This was terrible for me in terms of Pacing, as I pushed through so as not to let other people down. I didn't have self awareness about how this dynamic affected my ME.

They do not believe that any non-psychological treatments will help

This wasn't my experience. There's a lot of emphasis on mitochondrial function. Which (as far as I know ;)) no one says is psychological. On the biological side they seem to have similar views to Dr Myhill who's generally popular with pwme.

My appointments were with a nutritionist. She thought my problems were mostly stemming from adrenal insufficiency. I'm not convinced (I think probably this is a knock on issue) but this wasn't weird because the NHS immunologist who diagnosed me thought I had signs of Addison's.

I think they genuinely view it as complex. We are so used to BPS only pretending to include biological factors, it is hard to recognise a true BPS approach. I haven't read the Arroll thesis, she may have slightly different views, or have concentrated on one aspect for her PhD (She probably had to concentrate on psychology). I have read other OHC papers a few years ago eg I found the post traumatic growth one interesting.

They include ideas I definitely disagree with, I don't want to come across as an OHC evangelist, I just think we should disagree in an accurate way!

@Binkie4 I actually think we should be wary of the Maladaptive Stress Response idea. It's the type of thing that has a kernel of truth in it but can easily be spun into Lightning Process esque pseudoscience. Is there any convincing evidence from robust studies that we psychologically deal with stress differently from anyone else? I haven't read any.

On the other hand, it is clearly sensible to identify ways to reduce stress and relax, in order to rest properly. Stress is not good for health, especially our immune systems. Until we get effective, targeted treatment effective rest/relaxation is really our best bet. For some people OHC style psychology techniques, such as meditation, will help with this. For other people this will be intensely :mad: and not the right approach at all.
 
Messages
94
I'm a Don't Give A Shit About Subtypes subtype, and always have been.
Although I agree wholeheartedly on the personality type subtypes, I am curious about whether there are different symptom sets and whether they respond differently to treatments.
For example, for me, PEM is the most important diagnostic factor in knowing I have this thing: after presenting originally with all the symptoms of ME/CFS by any standard criteria, I have changed all lifestyle factors and now my symptoms happen only when I overdo it (with a 24hr delay) - cognitive (language and logic centres), sleep disruption, faint, nausea, pains, clumsiness, digestive, extremes of temperature regulation, pins and needles, viral infections (feet), etc. Low carb, or rather, very low carb, is not at all helpful to me (as far as I have tried). But other people swear by them.
Is there somewhere on PR where that kind of subtype is usefully discussed?

(I've looked but not found, which is probably my brain not the forum. Help?)
 
Messages
94
True but that's part of why I wonder.
Objective measures ...like change in exercise response measures on the second day seem promising to me
but others don't claim to have any delay in onset.

Sometimes I read posts and think: I don't have what they have. If that's what it is, maybe I don't have ME/CFS.
Then someone else describes their experience and I definitely have what they have.

Read a study and it shows some patients respond to x, but how do I know if they were like me? If their actual pathology says anything at all about mine.

Objective measures would help so very much. Sick of describing symptoms ad infinitum to no purpose. Signs and objective measures would be so much easier.

(Sorry, basic stuff isn't? Never mind. Back to pacing and hoping).
 
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Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Read a study and it shows some patients respond to x, but how do I know if they were like me?

Yes this is currently a problem.

The 24hr delay in your PEM sounds classic ME though. I get this too. If I do something one afternoon, I can feel my normal the next morning but by the afternoon (24hr) PEM sets in.

But I also know I'm in the POTS-ME subgroup (I've done the Tilt Table Test). About 1/3 of us have this as a comorbid condition. POTS can give me immediate fatigue after activity, like an out of breath style of fatigue, or immediate headache/faintness standing. It doesn't indicate that I don't also have ME.

Though misdiagnosis for anyone is a possibility.

Subgrouping seems like a meaningful plan for ME, but I would be surprised if it results in an association between personality and symptoms. I don't think that's expected. It will be more likely based on specific immune abnormalities or genetic issues.