Pacing - definitions and sources of information

Yes @Hutan, I agree 100%. "Over time, when your condition stabilises, you can very gradually increase your activities to work towards recovery" is complete 'bullocks', and that any ME charity spouts such wilfully misinformed cr*p appals me. It is wrong on every level, factually, ethically. It feels like it is written so that the DWP will look upon them favourably when reading it.

 

@NelliePledge

Your comment about not knowing about how severe ME can be, was also my experience when I was diagnosed. Although I went to a support group for a while, and subscribed to various newsletters, it didn't come home to me how extremely ill some people can be - live in darkened rooms, being tube fed. This, even though I was, and am mostly house and couch bound. Cognitive problems have been so bad that, although I think I read those newsletters of old, in re-reading, it's like it's for the first time. My retention is like that with a lot of info.

This brings me to a thought or three about advocacy groups. Do they effectively emphasize how bad ME can get? Or do they feel they must tread a line between stating the worst possible scenario versus keeping people's hopes up? Would it ultimately be most helpful to show the full range of possibilities? Would this galvanize more people to advocate, or have the opposite effect? Other disease groups know, or learn the full range of possibilities, and many of these groups have legions of volunteers/advocates.

An additional point about the AfME pacing info - what recovery?! The CCC, published by world-renowned experts, having seen some 20,000 pwME said recovery is 5 percent.

 

I think this is a very good point. It is difficult to come to terms with having the disease when first diagnosed. Knowing how bad it could get must make it much harder to deal with the shock of diagnosis. But I think it is very important that people should be told so that they can protect themselves.

The stories of people with ME losing their jobs, or becoming housebound or bedbound after ignoring symptoms and pushing themselves are extremely common. I wonder if all patients were told to rest, rest, rest at diagnosis and given the support they need to do this without any pressure to get back to work or school - maybe severe ME would be rare.

I believe there is a tendency to be positive which is well-meant but ultimately deceptive. There is a similar problem with epilepsy, in that people with epilepsy and their carers are not told how dangerous seizures can be. As a result death and serious injuries are far more common than they need to be.

 

There are people who've said pacing led to them recovering, and improving to close to recovery. It shouldn't be promoted as something that can be expected to lead to recovery though. IMO it's more about trying to make life as good as possible while ill.

 

@Esther12

Yes, pacing should not be promoted as rehabilitation, but as management. As you say, making life as good as possible though sick.

The question does arise however re those who recover, or nearly recover while using pacing, or whatever method. Do we know they meet the correct criteria? I'm not saying in this particular example you do not know if these people had ME.

I know of someone who was diagnosed with "cfs" who recovered after mostly bed rest for an extended period of time. And, yet, I am not entirely certain they had ME, even if it did sound like it.

 

I personally believe both the course of my ME and my life management were adversely impacted by not understanding adequately the possible and likely courses of my ME. It would be interesting to try to find a way of evaluating and quantifying these subjective impressions. As a forum I guess we under represent those that 'recover'.

However frequently one see's people asking questions about this or related topics on various forums. One of the commonest is people asking questions arround the level of work they should attempt. I find it very very difficult to decide whether or not to respond, and if responding how direct to be.

When working with people with neurodegenative and/or terminal questions I felt it helped to get to know a person, that though giving them clear facts arround their prognosis was essential, how you best addressed these issues varied enormously from person to person. Only once in fifteen years did I come across someone that did not want to know the likely course of their terminal condition.

In relation to some conditions the voluntary agencies are fantastic in relation to this. The Motor Neurone Disease Association advisors or the McMillan Nurses provided this information very effectively and are there over a period of time as people adjust and are more able to take things on board. However with ME there is not an establish system of voluntary support workers, we do not have good data, and in the UK the majority of specialist services are based on GET/CBT giving false expectations.

(It has taken me a while to type this so I hope it has not become redundant, also we seem to have ended up with two parallel themes in one thread.)

 

I expect that lots of people with different forms of health problems end up being included within all the different ME/CFS criteria, even if some are better than others. Some people seem to go on to recover, even if it's a small minority of those who've been ill for more than a couple of years.

 

http://www.cfsselfhelp.org/library/topic/pacing

 

As with ME every thing is more complicated than might initially seem. We have no clear idea if the small numbers that appear to have total remission have recovered from the underlying condition or are merely symptom free.

It is thought that children are more likely to 'recover' than adults, but anecdotally one hears about people who 'recovered' as children relapsing as adults. Unfortunately we have no idea of numbers.

With adults who 'recover' we have no idea how many relapse. I believed I had totally 'recovered' after four years of ME, but then linked to a bad dose of flue three years later had a major relapse which so far has lasted a further 19 years.

Add in the potential lack of reliability in initial diagnoses and confusion of what is meant by recovery ... ... ....

However apart from the small number of 'recovered' patients that become apostles for their preferred treatment method, those that recover tend not to participate in this debate.

 

@dangermouse

There might be an explanation of pacing in the Canadian Consensus Criteria for ME/CFS.

I will put that link in as an edit later - not able to right now. I access this document on the National ME/FM Action Network website. The Overview for this document might say something about pacing as well - it is also on that website. I will add both of these links later with pages noted where the info is, if they include something about pacing.

ETA: Hi @dangermouse - please see post further along in this thread for pacing info and links. Hope this helps.

 

@Peter Trewhitt

Yes, if management of ME had been biomedical, pwME diagnosed decades ago might not have worsened from guidance that downplayed it's severity. At the risk of being repetitive, at diagnosis, I was told by two authorities I would recover in 1 to 3 years. This advice given after my 6 year gradual onset. They viewed the entire length of this disease as 1 to 3 years

Lack of clarity and data in this field partly stems from ignoring experts such as Dr. Melvin Ramsay and his colleagues. If the majority of research had followed their lead, I think we might be further ahead with knowledge about prognosis, etiology
etc.

(Thinking about those earlier ME investigators/heroes, it's 50 years since WHO designated ME a neurological disease.)

 

@dangermouse

Link to the Canadian Consensus Criteria (CCC) - https://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf

Link to the Overview for the CCC - https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf


The CCC, pages 39 to 46, starting with the heading Individualizing Management Programs: Lifestyle Practices and Self-Help Therapies discusses general, or more overall inclusive self-care than just pacing. Pacing as regards exercise is noted on page 46 of the CCC.

The Overview, pages 10 to 12 provides a more abbreviated discussion of lifestyle management. Page 10, under Treatment Guidelines says: " Involve the patient in setting realistic goals and developing an individualized, flexible program conducive to healing. The patient must have autonomy concerning the complexity and pacing of activities, and incorporate rest periods as needed. Begin the program at a level that will ensure success, assist the patient in recognizing early warning signs, and plan alternate strategies for low-energy days. The goal is for the patient to be as active as possible without exacerbating symptoms. Patients can explore ways to increase activity boundaries if and when able."

Page 11 of the Overview under the heading, Patient Education, has an interesting point: " Encourage patients to take their temperature before and after an activity. If their temperature drops after an activity, they may have done too much."

These documents emphasize individually tailoring management of ME, as opposed to the one size fits all GET/CBT protocol discussed on pages 46 to 49 of the CCC.


Here is a Prohealth article about pacing:

https://www.prohealth.com/library/pacing-for-me-cfs-the-facts-23836

(I just came across this article - haven't read all of it yet.)

I hope this info helps.

 

Support at early stages is key. If you are diagnosed with dementia, you are provided with support ( in most cases a dementia nurse) for a year after diagnosis.

This helps the whole family adjust, and helps with the sense of hopelessness and sometimes depression that comes with initial diagnosis.

It also manages expectations, and this is the part that is key to learning to live with the condition.

There are ,of course, many different support services for those with terminal conditions, but even this model - one to one support for a year would make a difference.

If it could be with someone who had experience of ME ( themselves if mild or a a family member ) as there are so few professionals with any knowledge of ME it could be hugely beneficial, as this is where the practical knowledge base lies. A kind of ME doula.

I know @Action for M.E. have had funding for a project in Scotland for mentoring- See ME which has similar aims, matching people with experience of ME to recently diagnosed.

I don' t know how well this project has gone, or indeed what it' s aims and defined outcomes were. It would be great on either a shit day, or day when something that has been achieved (the likes of which is not really understood by those outwith this ME world unfortunately) to be able to contact and share with someone who " gets it" ( no pun intended)
Perhaps @Action for M.E. could give us an update?

This kind of intervention, in the early stages, could make a huge difference.

 

Exertion/activity/energy limit or cap?

 

In her comment under the Hilda Bastian blog, Ellen Goudsmit wrote:

 

No idea if it would work in english, but the norwegian term beeing used translates to 'activity adapting'. I don't think I ever heard confusion about what it means - adapting your activity to your current abilities.

The term is usually used in combination with the term 'energy conservation' as a means of preserving your energy and maximising the use of your personal energy envelope. Like sitting instead of standing in the kitchen, using a wheelchair for outings even if you can walk etc.

 

Energy-conserving activity management?

I want to say 'energy efficiency techniques' but it sounds like insulating your home!

Energy envelope pacing?