For those of you who have been long-time Foggy Followers, you’ll know that my ongoing struggle with weight has been a recurring theme over the last seven-ish years, primarily due to an increasingly necessary sedentary lifestyle that has allowed the pounds to slowly but surely accumulate. This was mainly because my M.E. has slowly worsened over that time and my energy envelope has been getting smaller and smaller. While I have managed to ‘successfully’ diet several times, losing around 7-14lbs each time, the weight inevitably crept back on, beginning to severely impact my self-confidence and self-esteem. Combined with Perimenopause-related shape change and weight gain (acknowledged by my GP) I felt the need to do something more drastic – such as changing my behaviour with food. Growing increasingly frustrated with conventional methods, I began actively searching for different, non-exercise-based weight loss solutions about three months ago, which is how, in August, an advert for a Neuro-Linguistic Programming (NLP)-based weight loss program popped up on my Facebook feed. This blog IS NOT AN ADVERT and as such I will not name the specific programme or identifiers. I also want to acknowledge personal choice and responsibility. If other people with M.E. choose to sign up to this weightloss programme, that is their own personal choice, but I want to make sure they know the risks specific to M.E. and Post Exertional Malaise.
While my personal struggle, and the focus of this particular blog, centres on the frustrating reality of weight gain due to severely limited activity, a predicament many in the M.E. community share, it is absolutely vital for me to pause and acknowledge that the struggle with weight in M.E. is far from universal. For every person desperately seeking ways to lose weight when movement is severely restricted, there are others who, due to digestive issues or the overwhelming energy demands of the illness, are chronically underweight and struggle immensely to put on or maintain a healthy weight. Both of these opposite experiences exist simultaneously within our community, often causing deep distress and frustration. This blog aims to share my recent experience, but it is written with the understanding and respect that the scales tip both ways, and the fundamental challenge remains the same: finding the right balance and health in a body that refuses to cooperate.
The easiest way for me to highlight this issue is to post the emails I have now sent to various organisations with my concerns. These emails are below.
Email to XXX, the NLP provider.
Hi XXX team,
I just wanted to drop you a note as a current user who’s had a really positive experience with your NLP programme, but also has a few concerns I hope you’ll take seriously.
I’ve been using XXX for just over two months now, and I’ve lost about a stone without really trying. It’s been brilliant in terms of retraining my brain around food and habits, so thank you for that!
However, I’ve noticed something important. As you know, the programme is nudging my subconscious to increase my movement, which, for most people, is great. But I live with M.E, and for me, increased activity can be dangerous. I crashed hard during the first two weeks because I didn’t realise I was doing too much. When I say ‘too much’ I mean doing the washing up when I already felt tired, climbing a flight of stairs when I didn’t have enough energy. I’m not talking about doing an exercise class or 3 mile hike. Now I actively resist the urge to move more, even when my body feels like it wants to, because I know the energy I do (and don’t) have. It is really difficult to resist by the way!
Full disclosure – I run two social enterprises for the benefit of the M.E. community and have been a M.E. campaigner for over a decade.
Here’s where my concern deepens. I heard X talking about NICE running a clinical trial involving XXX alongside Mountjaro users, to help change behaviour and mindset so people can maintain weight loss after coming off the jabs. That makes sense in theory, but I’m worried about what happens if XXX becomes widely recommended through the NHS, especially to people with M.E. Newly diagnosed people will not know about PEM and the risks of increased activity.
There are already quite a few pwME in the XXX Facebook group saying they simply exercise/move as much as their body wants them to. The problem I have with that is that the subconscious won’t know why we have to restrict energy usage. I’ve had M.E. for nearly 20 years, I would love to go hiking or go to a gym but I know the physical consequences would be too bad. I know the risks and still got caught out, so I worry about how many others might be harmed if this isn’t flagged properly. The subconscious encouragement to forget ‘learned behaviours’ like exercise avoidance is powerful, but there’s a reason those behaviours were learned in the first place, specifically with M.E.
Post-Exertional Malaise (PEM) is the defining characteristic of Myalgic Encephalomyelitis (M.E.) and is the reason people living with the disease have to be very careful about energy usage (physical, emotional, cognitive) – here is more info on what PEM is – https://www.s4me.info/docs/
PEM_Factsheet.pdf I fully appreciate that X isn’t a medical professional – I’m not either, that’s why I am supplying the link/info. Best wishes,
Sally
This was the response from XXX
Hi there Sally,
Thank you for your email.I sincerely appreciate you sharing your experience and concerns with us.The (brand name) are designed to nudge you to make healthy choices for your own body, and not push yourself further than is healthy for you, and this includes with movement.It’s really helpful to hear the experiences of our (brand name), and I will pass your experience onto our team so we can improve our programme.Regarding our clinical trials, these aren’t being conducted with NICE, but instead a university based in the UK. Once our clinical trials are completed, NICE can then decide whether XXX should be prescribed by the NHS.Again, we sincerely appreciate you sharing your XXX journey with us, and most importantly your experience of XXX as someone with M.E.
READER: It also needs to be said that the vast majority of people who meet M.E. diagnostic criteria are not diagnosed. There is a large chunk of people who won’t know that increased activity (not solely exercise) may have negative consequences. The caveat should be generic and not M.E-specific. Such as ‘if you find you feel increasingly unwell when your activity increases please pause or restrict how much you are moving’ (or something like that!). If we ONLY stick to actual diagnoses too many will be missed. No point saying ‘consult your GP’…how many would know enough about M.E./ PEM?
Then I contacted NICE (no reply received yet)
Dear NICE team,I’m writing as someone with lived experience of M.E (19 years) and as a current user of XXX, the NLP-based weight loss programme that I understand is now being trialled alongside Mountjaro as part of a NICE initiative. I want to share my personal experience and raise concerns about the potential risks this programme may pose to people with M.E, especially if it goes on to become widely recommended through the NHS.I’ve been using XXX for over two months and, on the surface, it’s been very effective, I’ve lost around a stone without consciously trying, and I can see how it’s helping to retrain my brain around food and habits. However, I quickly noticed the programme subtly encouraging my subconscious to increase physical activity. I crashed badly during the first two weeks because I wasn’t aware I was doing too much. Now, I actively resist the urge to move more, even when my body feels like it wants to, because I know the energy I do (and don’t) have. This is where the problem lies. XXX’s NLP approach seems to override “learned behaviours” like exercise avoidance, which, in the case of M.E, are not maladaptive but protective.NICE’s own guidelines for ME/CFS (2021) explicitly state that graded exercise therapy should not be offered, and that people with M.E should be supported to stay within their energy limits. Encouraging increased activity through subconscious suggestion risks bypassing the conscious pacing strategies that are essential for managing M.E safely.Full disclosure – I run two social enterprises for the benefit of the M.E. community and have been a M.E. campaigner for over a decade.To be clear, I acknowledge that this XXX NLP is not specifically targeting people living with M.E. I would suggest that under-diagnosis is an issue for the M.E. community and that brings with it associated risks. I’m deeply concerned that if XXX is adopted more broadly within the NHS, it may be recommended to people with M.E. without adequate safeguards. I’ve seen multiple posts in the XXX Facebook support group from others with M.E. who are pleased to be increasing their activity, unaware of the potential harm. I know the risks and still got caught out.I’m not writing this as a campaigner, but as an individual trying to lose weight safely. I would be grateful to know who within NICE is overseeing this trial, and whether there is a process for raising concerns about the inclusion of vulnerable groups like pwME. I’d also like to understand how NICE plans to ensure that behavioural interventions like NLP are aligned with its own ME/CFS guidelines. At the very least, a caveat on the risks to specific patient groups is needed.Thank you for taking the time to read this. I hope my experience can help inform a more nuanced approach to behavioural support in weight management, one that recognises the complexity of conditions like M.E.Best wishes,
Sally Callow
I then emailed the NICE email to the Mayor and CEO of the ICB supporting this trial in their region with this additional sentence –
I also wish to express concern about the lack of transparency around the XXX/Mounjaro trial. I am currently trying to find more information, and would appreciate any details you can share, or the opportunity to discuss further to ensure people with M.E. are not inadvertently put at greater risk.
I received a confirmation email a few weeks ago and was advised this has now been given to the correct people/departments.
Reader, I need to make a few things 100% clear.
- On day one of starting XXX, I knew it would be encouraging me to do more. I thought, because I know my energy limits, that wouldn’t be an issue. I was wrong.
- XXX does not target pwME with their advertising.
- XXX deliberately says that people with any conditions who shouldn’t/can’t exercise should still try to ‘move more’ even if it is 1 minute more than the previous day/week (GET anyone?!) ‘Any increase is good’ (paraphrasing but it is said repeatedly in coaching videos)
- I have now seen 15+ pwME and people with a ‘chronic fatigue’ or CFS diagnosis posting in the support group. I get the impression most don’t know about PEM and associated risks IF they have M.E. But, I am in that group as an individual NOT an M.E. campaigner. The group is also very heavily moderated as it is all about ‘positive psychology’, I wouldn’t get very far if I did post my concerns! Which Is why I have been sending private emails for a few months and reaching out to external agencies.
- I DID crash badly for the first 2 weeks. I thought it was after-effect of my holiday, but with hindsight I was able to see that my activity had increased substantially without me thinking about it. In the 6 years we have had our dog Maggie, I have only once taken her for a walk after lunchtime (because I rarely have the energy in the pm), but in the first 2 months of XXX I took her out 7 times after 3pm because I ‘fancied some fresh air’ and wanted to stretch my legs. I also restarted doing my ironing – I usually ask Foggy’s Chauffeur to do it for me or I wear it crumpled! I have also rediscovered my love of baking and cooking. Not because I am looking forward to eating the end results but because I want to DO MORE. I had thought it was all because of the positive psychology side of XXX and maybe I had been in a bit of a slump. But 3 weeks in, I realised it was the subconscious urging for me to do more. This is where I believe the danger lies. Prior to AUgust 2025, I didn’t do much baking/cooking for pleasure as I found it exhausting – that’s the point I’m making here.
- I would not touch NLP for M.E with a bargepole as M.E is not a behavioural issue but a biological disease. In many people, eating and food habits are behavioural (what, time, amount) and I believe are often down to learned behaviour and that’s why I started this programme in the first place.
- There is the argument that NLP is snake oil and doesn’t work. There are plenty of people in the FB support group unhappy that they haven’t lost any weight in 3 months. But I need to say that it has worked for me – I am an N=1. Though, historically, I have proven myself susceptible to hypnotherapy and I see NLP as similar. Power of suggestion and repetition, and all that works on me.
I am continuing on XXX and will be for the foreseeable future. I had wanted to keep my weightloss ‘journey’ private but feel this is too big an issue to not speak out about potential issues. However, I won’t be posting about future weightloss as that is a private matter. XXX has definitely helped me to change my eating habits, I now only eat when I am hungry, and XXX has shut down what they call ‘food noise’. I just wish it wasn’t so blooming hard to resist the urge to move more.