BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

[slysaint]

I ended up watching it too (and suffered/am suffering the consequences of staying up so late).
I was surprised that he knew/mentioned that ME was a problem with Mitochondria.
Didn't like his analogy with the toy train and saying about all her different diagnoses labels had to be stripped away to get at the real 'her'.........smacked a bit of BPS approach.

Interesting that he did the homocysteine test on the other woman with 'fatigue' (as he had previously done on another patient) but didn't do this for the one diagnosed with ME.
Also didn't like it ending on the Mindfulness and saying her Fibromyalgia had gone as had her brainfog.

I was also a bit confused by the hour walk every day (early evening?).
Had they ended with a conclusion she had been mis-diagnosed it would have been better.

 

[arewenearlythereyet]

I also have just watched this programme and have very mixed thoughts.

The diabetic segment was really good, but for the ME patient this showed a lot of heavy handedness. The treatment of vitamin B12 injections and vitamin D are far more likely to have had an affect on the improvement in cognition and pain than the change in diet or mindfulness but this wasn't ever revisited. Instead they focused on lifestyle changes.

we had a heavily edited section of her family saying how much better she was with a nicely tied up party at the end showing how she was so much better. There was far too much emphasis on diet change and mindfulness than anything else. Overall you got the impression that ME people are mild cases, highly emotional and can improve completely by cutting out dairy and gluten from their diet and doing mindfulness. I am very disappointed by this.

I would be interested to hear from the family about how their comments have been edited, particularly the older son and husband who seemed to have had their comments edited heavily to spin the improvement to be like she was fixed at the end.

I think they said that the self questionnaire should be a score of 10 for healthy people and she went down to 50's but they never gave context to this in the narration.

I agree with @trishrhymes. judging by the standing and walking she appeared mild-moderate, however it is difficult to tell with editing .....we don't know how much time she spends on the sofa etc. It's clear from her pain that she needed help with pacing and the b12. It also seemed that she didn't work and didn't prepare the family meal?

I am also angry that these improvements are not offered by GP's and in fact vitamin b12 is actively discouraged, I know this and pacing has been the most significant treatment for me to manage pain cognition and other key symptoms like sleep management. I wonder how many peoples quality of life could be improved with a simple injection?

Overall I don't think this programme has done the awareness of ME as a condition any favours in terms of the general viewer, although the patient and their family did a good job trying. It doesn't really matter I suppose since most people probably won't watch it, given that the BBC ratings people rescheduled-shoved it on at such a late slot.

 

[arewenearlythereyet]

Correct me if I am wrong, but they also seemed to make no mention of the start of Nicola's Illness i.e. a virus, glandular fever etc.? Putting more of a focus on her family life/emotions/diet etc.

Not everyone has ME/ CFS from a virus

 

[Molly98]

Have just watched it.
Hmm
Not sure what Dr would make of me. I seem to have gone in the opposite direction from this lady.
Done mindfulness and meditation for years, no improvement of symptoms. Do gentle yoga which has gradually declined over the years as health has deteriorated. I still do it now but just gentle stretching on the floor, no standing poses and I do it days when I can but have to miss quite a lot of days now.
I have done elimination diets for years. No gluten, dairy, sugar, wheat, low carbs. Don't drink alcohol.
So despite all the so called life style things I still deteriorating, they did not improve my condition and the only thing that unfortunately has given me any help and relief is medication.

I also wondered if she had been missing diagnosed with ME rather than it being her fibro causing fatigue as well as pain, as she did seem to be able to be active, walk for hr etc and stand and although in pain and causing fatigue, no mention or description of PEM.
I felt so sorry for her when trying to cut down on pain medication.
And I could really relate to her reaction when the doctor said about her fear holding her back, I don't think I could have been so polite. Things may have been thrown.... Possibly at his head....

 

[trishrhymes]

The woman featured in the program, Nicola, has written the following description of her experience on the MEA facebook thread discussing the program. Since it's a public page, I assume it's okay to copy it across to here. I've split it into shorter paragraphs.

https://www.facebook.com/meassociat...=notif&notif_t=like&notif_id=1498717090538746

'Hi everyone, I haven't read every message as it would take me all day but I hope that I can clarify some of the questions that keep being referred to.

Firstly I do have ME/CFS, I did then, still have it now albeit improving. The walk that keeps being mentioned was actually for 'well' people a walk that only takes 15 minutes. My philosophy at that time was that if I didn't push myself to keep moving then I would physically deteriorate. I would take painkillers before setting off and then not be able to move once home, it was my 'Mount Everest.'

The doctor found out that there was a problem within my gut which basically caused me to be heavily deficient in most vitamins, this was treated with antibiotics firstly and then I underwent a huge supplementation programme which included mitochondrial support.

The doctor banned me from any form of low key exercise or even walking the dog for 6 months to allow my body to heal as I had been pushing it too hard, I literally ran out of energy as I understand it.

As my fibromyalgia was caused by the gut issue, once that was sorted both the pains from fibro and the brain fog went away, that is what the show portrays and is correct in doing that.

I was also told to completely change my diet, no wheat/gluten/sugar or dairy as some of these food groups can create inflammation and therefore pains and by doing this I realised that gluten wheat and dairy are not great for my body.

In summation in order to improve I had to change my diet, take up supplementation, learn to listen to what my body was telling me rather than ignore it, learn about the autonomous nervous system and the sympathethic and parasympathetic nervous system within that, take up meditation which was a struggle as it didn't come naturally to me and sort out my personal stressors.

Since filming I have continued to improve, I have increased energy in terms that I am not sleeping as much during the day, I can go to bed later without paying for it, I no longer slur my words at night and I am so much more clearer cognitively.

I no longer have fibro so don't need the pain meds anywhere near as much but I still have a long journey to full recovery. I still cant work and I cannot run around etc, still struggle like you all do on a daily basis but without this programme I would have just gotten worse and worse.

The Optimal Health Clinic do exactly what Rangan did with me and they are a great source of information. For me ME/CFS is a multi factorial issue, its mental, emotional, physical and biological and to fully recover it all needs sorting. I wish every one of you the best of health you can be xxx'

EDIT TO ADD:
Nicola also made a couple of brief comments in response to questions:

'yes I was referred to Breightmet where I was taught pacing xx'

'the Optimum Health Clinic advised the same things Rangan went through with me. I attended their 90 day psychology course and that helped me to put all the puzzle pieces together so to speak. I would recommend them if you can afford it, there are different options too'

'Mindfulness is a way of calming your nervous system which then allows the body to heal. I thought it was nonsense at first but it has worked for me cos my body was constantly in the fight or flight mode. You may not be the same, but it does help lots of people so it's worth a go in my opinion'

'you could be on a ton of supplements but unless they are the right ones for you, they won't help'

It's a very lengthy discussion on FB, and I haven't read it all, but I think it's fascinating to see the difference between the story as Nicola tells it, and what the TV program portrayed, especially at its conclusion.

I think NIcola is a very brave person to have put herself through a treatment program in public like this, and to come on Facebook to tell her story. I'm sure any criticisms we make will be directed at the BBC and possibly some aspects of the treatment regime, not at her. I shall put a message on the FB discussion telling her, and everyone that it's being discussed here too, and inviting Nicola and others to join us.

 

[Hell...Hath...No...Fury..]

Thanks for posting that @trishrhymes

 

[Valentijn]

Optimal Health Clinic = psych central. And it sounds like the FM was probably a misdiagnosis. "We don't know what's causing your pain" is not the same thing ... and having an apparent alternative cause probably rules it out.

 

[slysaint]

I think GETSET Julie is a former or potential Optimum Health Clinic patient..............just reading a few posts on their FB page:

"Ex patient James tells a story of how he climbed a cliff face without feeling terrible afterward, and it was at that point that he knew he was making considerable strides in his recovery."

" I'm grateful for the part of me that stuck to my routine and did my yoga practice today even though I wasn't feeling it, letting go of the post holiday business was just what I needed ".

And the people who use the clinic are not your average [quote Hammond/EC] 'poor CFS sufferer', as one poster points out:

"If you have a stash off money and great support from family n friends then it's great ,why on earth they chose Harley street,for people on benefits mind boggling"

 

[ChrisD]

Similarly to @Molly98 I have done mindfulness and yoga, I've adopted different eating plans etc etc. Been at this over 11 years now and I'm getting worse, not better.

I think we can all agree that we have had a moment early on where we address vitamin deficiencies, try to treat gut and work extremely hard on our mindset towards the illness. And many of us will see an initial burst of recovery, I know I certainly did a few months back, but what ever is underlying does not seem to give in and will come back to bite you. I wish the best for Nicola in the programme and hope that she continues to recover and that she may well have just had nutrient deficiency/SIBO related fatigue rather than full blown M.E. but if she does have M.E. then her recovery may be short lived. But of course we will not see the BBC doing a catch up programme....

 

[Large Donner]

It was completely unscientific to throw everything he could find - vitamins, antibiotics, diet and mindfulness at a case, see her improve, and then attribute that improvement to the lifestyle changes, when it was much more likely that it was due to treating vitamin deficiencies and/or clearing SIBO and reducing side effects of the massive amount of drugs she was on.

Yes exactly. It's like giving you antiobiotics for a chest infection and then asking you to chant "Yaba daba dooo" for ten minutes at 9 pm every night and then saying that both of those things had equal effect on the outcome.

This is where the psychs will go when a real treatment comes out for ME they will still be pushing their CBT and GET on top and claiming that it is proof all along of how helpful they are.

I can just see them calling the gradual recovery from ME, with something like rituximub for example, as GET, hanging on with a "multidisciplinary approach" as they already do in so many walks of life now.

 

[trishrhymes]

I think we can all agree that we have had a moment early on where we address vitamin deficiencies, try to treat gut and work extremely hard on our mindset towards the illness.

Actually, no, not in my case.

I've had ME for 27 years and only in the last couple of years have my gut issues risen to the level that I now think I must tackle them. Though I had already put myself on a gluten and dairy free diet 35 years ago before my ME started to help with gut problems and migraine.

And although I know quite a lot about vitamins in the general nutritional sense, I am totally confused after less than a year here about where to start in finding out which ones I need to take more of, if any.

My GP practice have treated my ME with benign neglect for all of those 27 years. I'd love to have had someone like this doctor trying to get to the bottom of some of my symptoms and helping me sort out my gut issues. Apart already being gluten and dairy free, I have barely started.

As to working on mindset - my approach has all along been to do my best to ignore my symptoms and soldier on regardless. Which was not a good strategy, as I've discovered to my cost.

Though I do agree wholeheartedly with everyone that attributing any aspect of actual physical improvement in ME to psychological therapies is nonsense. I think Nicola was describing the therapy and mindfulness as helping her cope with the stress of the illness and understand herself better.

It was the doctor on the program who seemed to want to link her improvement to the diet and mindfulness.

Nicola seems much clearer that it was the antibiotics and vitamins that helped her gut and pain issues, and the pacing and being told not to exercise at all for 6 months that has helped her ME to improve a little. Unfortunately this was not even mentioned on the program,

 

[SamanthaJ]

Haven't watched this, just read the descriptions here, but it seems as though there was a big difference between what was shown and what actually happened. I know 6 months of resting doesn't make for gripping TV but it would have helped people so much to have discussed it on air. The programme seems to have been intent on attributing Nicola's improvement to something else. Good for her for clarifying things.

 

[Large Donner]

The Optimal Health Clinic do exactly what Rangan did with me and they are a great source of information. For me ME/CFS is a multi factorial issue, its mental, emotional, physical and biological and to fully recover it all needs sorting. I wish every one of you the best of health you can be xxx'

The problem with statements like these is that there is just no substance to them. Labels like mental and emotional can just about be applied to anyone over anything be they healthy or not. There's never any burden of proof required to make such causative claims and the terms are never really defined.

It also depends on the persons personal and often faith based beliefs which are usually notoriously unscientific. Its kind of like people claiming that part of their recovery from cancer after chemo was due to them praying and accepting a given narrative from a religious preacher.

 

[Njsingleton]

The problem with statements like these is that there is just no substance to them. Labels like mental and emotional can just about be applied to anyone over anything be they healthy or not. There's never any burden of proof required to make such causative claims and the terms are never really defined.

It also depends on the persons personal and often faith based beliefs which are usually notoriously unscientific. Its kind of like people claiming that part of their recovery from cancer after chemo was due to them praying and accepting a given narrative from a religious preacher.

For me there is a lot of substance to it. I completely understand that we all want to know the one thing that caused us to have this illness. I went to the OHC hoping they would give me the 'magical, mysterious cure' that would make me well again but it really isn't like that. This illness has so many aspects to it and for me it has taken a lot of changes and it is undoubtedly hard going, all I know is that for me, it slowly but surely is working and all I have been trying to do is tell people what has worked for me in the hope it may help someone else too. We all have our own opinion about our own illness and thankfully we all have a choice as to how we feel to best deal with it.

 

[Large Donner]

For me there is a lot of substance to it. I completely understand that we all want to know the one thing that caused us to have this illness. I went to the OHC hoping they would give me the 'magical, mysterious cure' that would make me well again but it really isn't like that. This illness has so many aspects to it and for me it has taken a lot of changes and it is undoubtedly hard going, all I know is that for me, it slowly but surely is working and all I have been trying to do is tell people what has worked for me in the hope it may help someone else too. We all have our own opinion about our own illness and thankfully we all have a choice as to how we feel to best deal with it.

So where is the objective evidence that ...

This illness has so many aspects to it

in the sense that this sentence has any substance......

For me ME/CFS is a multi factorial issue, its mental, emotional, physical and biological and to fully recover it all needs sorting.

Why is ME a mental and emotion issue rather than the fact that all humans experience mental factors and emotions.

Do you think cancer is a "multi factorial issue, its mental, emotional, physical and biological and to fully recover it all needs sorting"?

How about motor neuron disease, AIDS, MS etc.

Just saying "this illness has so many aspects to it", is a statement of zero substance. As stated by a poster earlier in this thread when the Doctor is just chucking everything at the illness and then making curative claims for mindfulness or lifestyle changes it is a completely unscientific approach to take.

I'm talking about ME not fatigue or stress or over work when I talk about "ME/CFS" I think this is also problematic when people makes unsubstantiated claims to have improved or recovered from x or y or z without understanding the flaws of doing so using three or four things at a time and especially when some of those "treatments" are faith based quackery.

If someone claimed they recovered from cancer using chemo therapy and spiritual yodeling would anyone take the claims of the yodeling at face value and would they stand up to scrutiny when tested.

I am always skeptical of claims made about improvements in ME when the so called treatments amount to nothing more than pacing strategies dressed up as mystical eastern meditation etc or relaxation therapy type claims.

All they are really doing is living within the limits of a disability whilst allowing it to be claimed by outside experts that its a cure or treatment.

The best example I can give is if someone with a disease or disability is not accepting of their current limitations and tries for a period of time to continue doing things they could do as their previously healthy self and then someone comes along and tells them to take up mindfulness etc. All they are really doing is a form of pacing in my opinion and living within their new disability limits. The hocus pocus of mindfulness is not a cure for ME or any other illness to cure the person of a physical disease.

 

[boombachi]

Thank you @Njsingleton for sharing you experiences of improvement. I wish you continued recovery. It was so heartwarming to see how supportive your family are and how pleased they were to see you improve. Your children are fabulous. You must be very proud.

 

[trishrhymes]

Just saying "this illness has so many aspects to it", is a statement of zero substance. As stated by a poster earlier in this thread just chucking everything at the illness is a completely unscientific approach to take.

Hi @Large Donner , please go gently with @Njsingleton - she is a new member here, and is exploring for herself her feelings about how the illness effects her. She is making a statement about her own experience with her own illness, not a claim about the science of ME. I think I am right in guessing that @Njsingleton is the Nicola featured in the program.


I think it was me you are quoting about 'chucking everything at the illness being unscientific'...

Actually what I meant there, was that, as a GP treating a patient, it makes sense to tackle it on more than one front at the same time:

biological treatment - diet, antibiotics and vitamins for the SIBO and its effects, and indirectly to help with the fibromyalgia and brain fog.

physical treatment - treating the ME with 6 months rest and learning pacing,

psychological treatment - meditation and psychotherapy to help with the stress and coping with the illness.

This is not unscientific when there are a complex combination of conditions that are tackled in different ways.

For Nicola, all these treatments helped in different ways, so for her, it is correct to say that her illness has biological, physical and mental emotional aspects.

What I think was unscientific was the way it was presented on the TV program as though, if I remember correctly, the diet and meditation had cured her. I don't know whether this was a fault in the editing, the doctor's opinion, or me not remembering what the doctor said at the end.


@Njsingleton , welcome to the forums, thank you for sharing your experience which I hope others will also find helpful. I hope your health continues to improve.

If you stick around I hope you will feel supported and enjoy the company as well as learning more about the ME world.

We people with ME have suffered a lot at the hands of ignorant doctors who try to tell us our illness is all in our heads, which is why, when someone says there is a mental/emotional aspect to ME, we sometimes get a bit hot under the collar.

I think everyone would agree that, like all illnesses, it can have effects on our emotions, but it's the idea that the illness is caused by faulty beliefs and can be cured by changing our thoughts that has done enormous harm and has been proved completely bogus. Psychological therapy and meditation can help some of us cope, but they are not a cure, as I'm sure you'd agree.

 

[Njsingleton]

Hi @Large Donner , please go gently with @Njsingleton - she is a new member here, and is exploring for herself her feelings about how the illness effects her. She is making a statement about her own experience with her own illness, not a claim about the science of ME. I think I am right in guessing that @Njsingleton is the Nicola featured in the program.


I think it was me you are quoting about 'chucking everything at the illness being unscientific'...

Actually what I meant there, was that, as a GP treating a patient, it makes sense to tackle it on more than one front at the same time:

biological treatment - diet, antibiotics and vitamins for the SIBO and its effects, and indirectly to help with the fibromyalgia and brain fog.

physical treatment - treating the ME with 6 months rest and learning pacing,

psychological treatment - meditation and psychotherapy to help with the stress and coping with the illness.

This is not unscientific when there are a complex combination of conditions that are tackled in different ways.

For Nicola, all these treatments helped in different ways, so for her, it is correct to say that her illness has biological, physical and mental emotional aspects.

What I think was unscientific was the way it was presented on the TV program as though, if I remember correctly, the diet and meditation had cured her. I don't know whether this was a fault in the editing, the doctor's opinion, or me not remembering what the doctor said at the end.


@Njsingleton , welcome to the forums, thank you for sharing your experience which I hope others will also find helpful. I hope your health continues to improve.

If you stick around I hope you will feel supported and enjoy the company as well as learning more about the ME world.

We people with ME have suffered a lot at the hands of ignorant doctors who try to tell us our illness is all in our heads, which is why, when someone says there is a mental/emotional aspect to ME, we sometimes get a bit hot under the collar.

I think everyone would agree that, like all illnesses, it can have effects on our emotions, but it's the idea that the illness is caused by faulty beliefs and can be cured by changing our thoughts that has done enormous harm and has been proved completely bogus. Psychological therapy and meditation can help some of us cope, but they are not a cure, as I'm sure you'd agree.

I do agree, I totally know that ME/CFS isn't all in the mind-I have lived with this for a while now and it is exhausting. Undoubtedly some people are worse than me and I am so grateful that I get to live a half life when so many don't however I can't apologise for saying there are many elements to this illness- beliefs I disagreed with before but when you have an amazing doctor along with a specialist London clinic run by people who once had ME/CFS/Fibromyalgia all telling me that it is biological, mental, emotional and physical and actually once I started listening to what I was being told and started following it, I began to improve. 7 months on and I am fibromyalgia pain free, no flare ups, still have CFS and still can't be as physical as I would like but I am improving and that keeps me going. How we choose to live with these illnesses are our own choice. I am open to any suggestions that help because I am my own proof of that, so obviously I can't deny it. Best wishes xxx

 

[Large Donner]

My post is not aimed at @Njsingleton its aimed at quackery as a whole and how easy it is to buy into it.

For Nicola, all these treatments helped in different ways, so for her, it is correct .

Yes but my point is that all people have emotions and mental processes it doesnt mean to say that any given illness has those parts as contributory or causative. Those kinds of assumptions made by quack type doctors are damaging and so easy to buy into without actually taking a closer objective look at the claims made such doctors.

psychological treatment - meditation and psychotherapy to help with the stress and coping with the illness.

This is not unscientific when there are a complex combination of conditions that are tackled in different ways.

Just to clarify, my problem with this kind of statement is it can inadvertently imply that everyone requires or benefits from such dubious subjective "treatments", and that they have anymore benefit when delivered by a "professional" rather than the average person not requiring them and managing their disease perfectly fine without them.

I dont think its right to summarize it as my ME ...

has biological, physical and mental emotional aspects

Its fine though if someone wants to say that THEY required outside help with the emotional and mental aspects of a given situation but not qualify it to a given illness as a proportionate part of the illness itself.

 

[trishrhymes]

My post is not aimed at @Njsingleton its aimed at quackery as a whole and how easy it is to buy into it.

Thanks for clarifying.