MEA Website Survey: Physiotherapy and ME | 02 July 2019

www.meassociation.org.uk/2019/07/mea-website-survey-physiotherapy-and-me-02-july-2019/

 

The options on the survey are

• 
  As a person with M.E. what has been your experience of physiotherapy?
  
• Positive and helped make my M.E. much better
• Positive and helped my M.E.
• Positive but did not help my M.E.
• Neither positive, nor negative
• Negative but helped my M.E.
• Negative and made my M.E. worse
• Negative and made my M.E. much worse
• I have not received physiotherapy for M.E.

Some of the options are confusing to me, based on the question asked. If physiotherapy didn't help my ME then no matter how nice the physiotherapist was, I wouldn't rate it as positive. If the question however was, "how nice was your physiotherapist AND did it help your ME" then some of the options make more sense.

 

There are three options with helped/made better but only two options with made worse. But supposedly they have both an option- and word- limit

 

I had physio for my shoulder recently and he was very interested in my ME and encouraged me to only do the movements he recommended within the bounds of my ME. I was pleasantly surprised.

 

That’s very good to hear.

I had a lovely one some years ago for my hip pain, she was similar.

 

When I attended the local ME/CFS Clinic (2014) the Clinician was a Physio. Very pleasant, very helpful, very useful (for letter writing).

CBT/GET but from a reasonable person who always told me to stay within my limits.(*)

However, it wasn’t until after I was discharged from clinic, dismissed from work and finally put into Support Group after a Tribunal (2015), that I realised how much stress I had been under (in addition to having M.E. Pain and severe cognitive problems by that point)

I wouldn’t even attempt to do the drive to the clinic (30mins each way) these days and I would ‘only’ be classed as Moderate ME (walking wounded).

I would still need to answer ‘no physio for ME’ because I received no physical treatments.

I do pay for a massage every 2-3 months with a masseuse known to me. Very gentle massage, with recommendation for Epsom salt bath (if I can manage), lots of water to drink and plenty of rest for at least 24 hours afterwards. I would be interested in that sort of treatment.

(*) Off topic - apologies - can anyone explain please?
GET - must avoid ‘boom and bust’ actions.
Then encouraged to increase activity by 10% (boom) thus causing a ‘bust’.
Have never understood this thinking!

 

I think the idea, re: boom and bust, is that you're always supposed to boom. If you feel ill, you don't stop.

 

I think it's good that physiotherapists have knowledge of ME but I don't see what use it could have to ME patients other than for unrelated problems, where the specific limitations of ME are taken into account rather than treated as hostile noncompliance to be referred to gaslighting "therapy".

Maybe it's because I've always been very active and have a good working knowledge of physical training, but really the most basic knowledge that is usually covered in physical education is quite sufficient with the added caution of knowing your limits and adhering to them.

I make specific efforts to walk, climb stairs and stretch every day, as much as I can handle without facing consequences. Perhaps some very light floor mat pseudo-exercises, the kind that basically skirt the line between light activity and stretching. Anything more than that is too risky for the meagre benefits they could have.

Not to diss on the effort, it's important that the risks involved are known by people who may be advised to ignore them, even advised to lie about them. But as far as tackling specific problems of ME go, this is way, way down the list. The measurable impact would basically be nil compared to what is most needed.

Except of course if it would lead to enough understanding that it would challenge the GET nonsense, with physiotherapists refusing to comply with what they would know is harmful pseudoscience. Now that would be incredibly useful, but it's a systemic approach, not a personal one.

 

I was sent to the local NHS Physio after diagnosis.

A girl in her 30's. She said, "There's nothing I can do for your ME. My aunt has ME, it's a shame" She then went on to chit chat for about an hour about her aunt, ME and how I should deal with it. She was fantastic.

Quite revealing when I mentioned this to my GP not long ago. His chin dropped which confirmed my suspicions about him.

 

I also couldn’t make any sense of the MEA survey based on my experience, so I just emailed the physios directly.

 

Does the last option imply that all the options above are about receiving physiotherapy "for M.E."? ie not asking about the side-effects on M.E. when receiving physiotherapy for something else? The title of the contact email and the following passage seem to confirm this:

I am also baffled by this claim:

I thought the current situation was that the psychs have created a world where M.E. sufferers are coerced into visiting physiotherapists to receive treatment based on a false illness model. I've been maximising my potential for the last five years by hiding from the medical profession and avoiding pushing myself beyond my physical limits at all costs. Have I been doing it wrong? Should I have been visiting a physiotherapist after all, and what beneficial skills have I been missing out on?

No disrespect to physiotherapists, I'm sure they're wonderful at what they do, but why would a M.E. sufferer voluntarily visit one "for M.E."? And why is the MEA trying to persuade me to benefit from their skills? Unless the physio was prepared to ignore everything they've been taught about M.E. including the rubbish in the GETSET Julie leaflet, to ignore their instructions on how to treat us, and to have no objection to me lying on my sofa whenever I felt like it, including for months if necessary ... But even then, why would I go?

M.E. hardly falls within the remit of physiotherapy, even if by circumstances M.E. sufferers and physiotherapists have currently been forced together. When the psychs aren't blaming patients, they're blaming physiotherapists for wrongly delivering the treatment. If the physiotherapy profession wants to help M.E. sufferers, they should just say "Stop sending us these patients, we're the wrong discipline, coercing them into exercise just makes things worse. Don't blame them, don't blame us, take a good look at yourselves and scrap your bullshit illness model, we're sick of being roped into this farce".

Patients and physios cosying up to each other because we've been forced together is completely the wrong approach. Now that we finally have a few psychologists with an ounce of integrity who care about their profession and how it is being abused for political / empire building ends and are prepared to call out PACE, is it too much to hope that a few physios might do the same?

 

That would be my thought. It is encouraging to see physios taking a critical approach to current guidelines but I don't see any reason for them to think that they might have something else to offer. Advice on not getting contractures and bedsores for severe cases maybe, but not much else.

 

I think they think people are doing 100%-200% more than usual to cause PEM, rather than 1 or 5% extra.

Because they have no idea what it's like to be ill with this and PEM just doesn't compute to them. They woudn't themselves be sick in bed unless they did really unusal activity, so we must be doing really unusual activity to cause that. Reasoning error.

 

They ought to be trained in massage, and (in the US) massage from a massage therapist is not covered under Medicare (but it would be if delivered by a physical therapist--because Medicare is decided by stuffy bureocrats who don't understand things and don't want to cover anything that "sounds luxurious" even if there's a medical reason). If they could make home visits and limit their treatment to very gentle massage, that would be helpful to me.

Last time I asked a PT who made home visits if they could do this, they said my doctor had asked for walking training, but agreed this wouldn't be helpful for me. They said they had nothing else to offer as they didn't do massage and they wrongly claimed they couldn't do anything that wouldn't create improvement. They weren't impressed when I cited Jimmo vs. Sebalius.

Sorry about all my spelling errors today.

 

Yes they are trained in massage, but this tends to be either for conditions that have a noted benefit ( not really part of the ME playbook) , or from a private physio.

A few physios here work part time in NHS and have private businesses . Massage was beneficial for my daughter but took too much out of her.

Gentle stretching exercises to retain muscle tone would be beneficial, and to ease off ever tightening ones.

 

I think all medical professionals need some basic education about ME/cfs and PEM. Physios may need this training more urgently since they may be more likely to advise their ME patients to exercise without realizing the harm it might cause. But all doctors need to know this, right?

For what it's worth, massage makes me feel worse. It makes my muscles ache more.

Or at least, it used to years ago. I have not tried massage lately because I have no reason to think that things have changed. But I don't know for sure since my symptoms have changed somewhat over the past 29 years.