Sally Doherty

@sally_doherty | contributor
M.E/CFS sufferer (since Oct 2005). Seeker of silver linings. Writer. Nature lover. Living in leafy Surrey (UK) with husband and three-legged Labrador. Find me on Twitter @SallyClareR
Sally Doherty

Why NICE Guideline Changes Are Good for ME Patients

Anyone who has ME (myalgic encephalomyelitis) or lives with someone who has it will know that you cannot just “push through” the fatigue. The more you ignore the symptoms, the more you spiral towards relapse. When I first fell ill with ME, I, like many others, tried to push on. I was far too ill to work but I tried to go for walks, even a swim (when you struggle to get dressed or wash your hair, you’ll see how ridiculous that was). At some point over the first year, I realized how detrimental this was. My health was steadily declining and I was becoming even more trapped in my bed. Once I started to reduce my (already minimal) activity level and introduce frequent rests in my day, I began to find some stability and relief from the worst of the symptoms. For over a decade, the NICE (National Institute for Health and Care Excellence) guideline for ME has advocated the use of Graded Exercise Therapy (GET) for the treatment of ME. Graded Exercise Therapy is based on the PACE trial which included flawed data and conflicts of interest amongst the investigators (namely their relationships with disability insurance companies). The PACE results have since been largely disproven but still NICE have kept them in their guidelines. According to the NHS website: “GET is a structured exercise programme that aims to gradually increase how long you can carry out a physical activity. It usually involves exercise that raises your heart rate, such as swimming or walking.” This kind of advice makes my jaw drop so far it hits the floor. From experience, I know this is the worst possible advice for people who have ME. Before I fell ill, I hated to go a day without exercising. Having ME does not mean we are lazy and exercise-averse. Unfortunately, NICE guidelines are seen as best practice for the medical profession in the UK to follow. Numerous patients with ME have been forced to do Graded Exercise Therapy resulting in much harm and in some cases, even hospitalization. Furthermore, the advocation of GET and also Cognitive Behavior Training (CBT) has only increased stigma within the medical profession and society that people with ME are responsible for our symptoms. Which leads me to today — November, 10 2020 – when the UK ME community woke to the news that NICE had published a new draft guideline. Whilst the 72 pages need to be studied in detail before full conclusions can be drawn, the main headlines are clear: 1. Physical activity or exercise or GET should NOT be offered as a treatment or cure for ME. 2. CBT should not be offered as a treatment or cure for ME (but can be offered as support in managing the distress of a chronic illness if the patient wishes). I, amongst many others, cannot believe this has finally happened. And it is only due to the tireless campaigning and work from ME charities and individuals to whom we will always be grateful. We cannot help the individuals who have already suffered so much from the PACE trial and the NICE guidelines. But this is a huge step in the right direction. And hopefully it marks the start of change within medical profession. We already face so many battles with our symptoms. If we can finally have the support of doctors, that will be one less thing to fight. It is important to note that this is still a draft guideline and it is vital it is seen through to fruition. ME is a biological illness and it needs biological treatments and cures. With GET no longer on the NICE guidelines, there is hope on the horizon.

Community Voices

What text message do you need to receive when you're struggling? 💬

<p>What text message do you need to receive when you're struggling? 💬</p>
341 people are talking about this
Sally Doherty

When Illness Means You Can't Do Anything

I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. Days when all you can do is survive and when that’s far from easy. And I know the best thing I can do is mentally accept it and say, OK, bed day, and put my head down till it passes (which it eventually does, no matter how much you believe it won’t when you’re in the moment). But here’s the thing, I am rubbish at accepting these days. I was brought up in a society that says doing is good, doing is achieving. A society where self-worth seems to be determined by success. But when I’m having an abysmal bed day, I can’t do anything. Just breathing, existing (and trying to wash and eat) is like climbing Mount Everest with the flu. So, if I can’t do anything, my day feels wasted, it feels worthless and I feel worthless. But, you guys, maybe we weren’t put on this planet to do? Maybe we were put here to be. You tell me who’s winning: the human who commutes bleary-eyed to work, spends a long day at his desk and returns home to grab dinner and watch TV before tumbling into bed? Or the robin who sings when the sun comes out, the seagull who floats on the waves  – the creatures who delight in the sheer pleasure of being? OK, I know that when we feel really ill, it’s hard, sometimes impossible, to enjoy simply being. But as I lay there the other evening, feeling sorry for myself and unable to think much other than “ugh, I feel awful,” I heard the rain lashing outside. I turned to see the window pane bejeweled with raindrops glistening in the light from the streetlamp. And a small part of me felt lucky. I used to be that person who did, did, did. Who didn’t even notice that the garden was starting to flower. Now, when I can get to the garden, I delight in seeing how my daffodils are coming on. In reality, I know it’s horrible to not be able to do. And extremely frustrating when there’s so much you want to do but your body won’t cooperate. But  That my life is still worthwhile. And that I am enough. No, I can’t do. But I can appreciate the world around me. Because who says doing is success? Who says a day is wasted because you couldn’t do anything? There are so many marvels in this life that are there for everyone to see, but no one stops to look. But you do, lying in bed, sitting in your chair. Your worth should not be determined by what you can do. You are you. And you are awesome. You are making the best of the difficult situation you’re in. And if you can take pleasure in the world around, then maybe you are the one who is winning. That robin and that seagull have a valuable life lesson for us all.

Community Voices
Community Voices

What's your rose (high) and thorn (low) from the weekend? #ChronicIllness #MentalHealth #Disability

Saying my rose and thorn was something that I did every day when I went to sleepaway camp. Tell me your rose and thorn from this weekend!

My rose was that I FaceTimed my dog, he was so happy to see me. My #MightyPets really improves my day.

My thorn is that I got frustrated while studying for a French fluency exam that I'm taking tomorrow. The only time my #HearingLoss "bothers" me is when I have to listen to audio, as I read lips. It's frustrating how accommodations really don't help some disabilities.

#ChronicPain #RareDisease #Fibromyalgia #Depression #Anxiety #BorderlinePersonalityDisorder

10 people are talking about this
Community Voices

Due to being newly diagnosed I can't help but think that have I made myself have no energy?

I think of a task I need to do like having a shower and dread it. So then after said shower I want to go to sleep.

You just always wonder if your thinking it worse.
Does this make sense?

6 people are talking about this
Community Voices

Due to being newly diagnosed I can't help but think that have I made myself have no energy?

I think of a task I need to do like having a shower and dread it. So then after said shower I want to go to sleep.

You just always wonder if your thinking it worse.
Does this make sense?

6 people are talking about this
Community Voices
Community Voices
Sally Doherty

When Illness Means You Can't Do Anything

I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. Days when all you can do is survive and when that’s far from easy. And I know the best thing I can do is mentally accept it and say, OK, bed day, and put my head down till it passes (which it eventually does, no matter how much you believe it won’t when you’re in the moment). But here’s the thing, I am rubbish at accepting these days. I was brought up in a society that says doing is good, doing is achieving. A society where self-worth seems to be determined by success. But when I’m having an abysmal bed day, I can’t do anything. Just breathing, existing (and trying to wash and eat) is like climbing Mount Everest with the flu. So, if I can’t do anything, my day feels wasted, it feels worthless and I feel worthless. But, you guys, maybe we weren’t put on this planet to do? Maybe we were put here to be. You tell me who’s winning: the human who commutes bleary-eyed to work, spends a long day at his desk and returns home to grab dinner and watch TV before tumbling into bed? Or the robin who sings when the sun comes out, the seagull who floats on the waves  – the creatures who delight in the sheer pleasure of being? OK, I know that when we feel really ill, it’s hard, sometimes impossible, to enjoy simply being. But as I lay there the other evening, feeling sorry for myself and unable to think much other than “ugh, I feel awful,” I heard the rain lashing outside. I turned to see the window pane bejeweled with raindrops glistening in the light from the streetlamp. And a small part of me felt lucky. I used to be that person who did, did, did. Who didn’t even notice that the garden was starting to flower. Now, when I can get to the garden, I delight in seeing how my daffodils are coming on. In reality, I know it’s horrible to not be able to do. And extremely frustrating when there’s so much you want to do but your body won’t cooperate. But  That my life is still worthwhile. And that I am enough. No, I can’t do. But I can appreciate the world around me. Because who says doing is success? Who says a day is wasted because you couldn’t do anything? There are so many marvels in this life that are there for everyone to see, but no one stops to look. But you do, lying in bed, sitting in your chair. Your worth should not be determined by what you can do. You are you. And you are awesome. You are making the best of the difficult situation you’re in. And if you can take pleasure in the world around, then maybe you are the one who is winning. That robin and that seagull have a valuable life lesson for us all.